Up until last week, things were going really well. My kidney function was the best it had been a gfr of 64 and I was starting to feel a return to normal. I had a low wbc but transplant center wasn’t concerned. And then the SH*T hit the fan.
I came down with a GI infection- fever, chills, cramps and bloody diarrhea. My center sent me to the ER. I was released as the fever was nearly gone and chest x-ray, blood tests etc came back clear of infection.
GI symptoms continued once home. I saw my GI doc who told me I most likely had a GI infection that could cause some residual symptoms but to eat a BRAT(bananas, rice, applesauce) diet. I’ve been following that and it seems to help and as soon as I try to eat a bit of chicken or cooked veggies I’m in the bathroom again. Any advice on this would be great!
I’m on Sirolimus and Envarsus and am experiencing the canker sore(Not cold sore) from HELL! It is the size of a shirt button on the inside of my upper lip and it aches and burns and wakes me up at night. It increases in size every day. My whole mouth on that side is visibly swollen from the outside and the pain is starting to shoot up into my ear. I’ve tried magic mouthwash, oragel rinse, oragel gel, coconut oil rinses. Nothing helps. I’ve asked my PCP, G.I Dr. Dentist and Transplant Center for help. Everyone washes their hands of it telling me go to the next specialist. I had mentioned a few steroid washes and gels mentioned on here. No one seems to want to prescribe these for me. For the love of God, can someone please help me? Has anyone gotten these and what has helped?
Also, my white blood cell count is still low and the transplant center is not addressing it. This has been going on for over a month. And when I do ask them questions I feel like I’m getting the brush off. I really don’t like the transplant nephrologist that was assigned to me after my surgery. Wondering if I can switch. Any advice anyone can give me I would so appreciate it. Thank you.
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Jamok
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Hi Jamok! This stinks! These specialist silos drive me crazy. All I can do is echo your frustrations. I’m nearly 10 years out and I feel like post transplant life is wack a mole. More and more I feel abandoned by the medical professionals.
I have had a few canker sores and I used a salt and water rinse but I’ve never had them as you describe. I just noticed that those mouth sore rinses exist. I didn’t know that but you’re way ahead of me.
My WBC has been low all these years so I just assume it’s normal for me in my post transplant world. I am assuming your levels are good on your meds. I think that fine tuning immunosuppression is a fine art.
Re: GI/diarrhea issues, I read that some pediatricians recommend marshmallows and I definitely had to try that.
I’m sorry I have no real help for you but I think you’re doing the right thing by asking the community. If a problem is life threatening the docs are great but for quality of life issues my experience has been my knowledge of my own situation plus anecdotal evidence from others plus internet medical searches have served me well. Not to mention you have to also be eating well, getting exercise and managing your stress, ha! Still, it cements the “transplant as treatment, not cure” in my mind and I continue to hope for better.
I hope you get some relief soon. Sending best wishes!
Over the nearly 10 years since my transplant my WBC usually hovered in the 3.x range. In the last year it has ranged from 3.0 to 4.5. This last in-range number was from last month and the only in-range WBC number this past year. It has been in-range only a half dozen times all these years.
I have no advice Jamok but wanted to say I hope you feel better soon. That sounds awful. Inreally hope you get some answers and SOON. One thing I have learnt on this journey, nobody cares about your health more than you. Demand they look into the low wbc. They are the specialists and should be able to provide an explanation . Keep going my friend.
Just googled your symptoms. Has Leukopenia been mentioned? Symptoms are low blood counts, mouth ulcers and fever and chills? Sorry if i haven't spelt it correctly
yikes, I am sorry you are going through this. I was on a drug that cause canker sores in my mouth. I talked like I was hearing impaired because it hurt so bad, I could not talk clearly. My doc recommended folate to combat it and it helped. Just a suggestion.
Just the other day, it was mentioned on this forum that vitamin B12 and folate help with WBC and their renal dietitian was helping with that. (Check Jayhawker posts) Also, quality proteins may be important, too,but Its sad that you're usable to digest any now.
It's shocking that you're not getting the help you need. What's the use of having a team if they don't have your back. Still, keep demanding some assistance and don't stop even if it's hard when you're sick. Remember the squeaky wheel .
BTW doesn't some types of yogurt help with the GI issues?? Maybe, others can offer this info. And, its unbelievable that given the extent of your symptoms, they're only recommending the BRAT diet.
first of all I am so sorry that you are having these issues. My wife is a retired nurse practitioner and used to work oncology. Mouth ulcers were common in cancer patients and they used Maalox as an oral rinse to coat the ulcer. Use it as a rinse and spit. They healed nicely. She said to just give that a try to see if it helps in most cases it helped coat and heal the sore.
My advice is stay demanding of your medical personnel and insist that if they can’t help you that you need to find somebody that will. With the medical center that I worked with prior to transplant I was having issues of getting information and I called the patient experience department. Once I shared my concerns, it seemed like everything turned 100% more positive. Don’t be afraid to be an advocate for your self!
My son received a living donor kidney about 2 years ago. He has had low WBC which I believe is common in pts on immunosuppressants. By all means ask to switch to another transplant nephrologist. Nothing wrong with that. Doctor-patient relationship is most important.
I don’t know about most of what is going on with you but maybe I can help with the mouth sore. I was given “Triamcinolone Acetonide” dental paste USP, 0.1%. It is a prescription and it worked well for me.
I also found that at 18 months post surgery the mouth sores stopped. Now I only get one if I get stressed out.
Just to be clear, my mouth sores were nowhere near as bad as your’s sounds. It sounds to me as if you need some anabiotic for that, but I’m no doctor.
Thanks! Encouraging that they slow down/ stop eventually. Which anti rejection meds are you taking? I mentioned that paste to my team and they didn’t respond. So strange.
First of all, you have the right to see a nephrologist that listens to you, cares and doesn't give you the brush off. I travel 2 hours to see mine. I can have my labs done locally. I have been seeing this nephrologist for the last 7 years. He discusses things with me and listens to what I have to say. He realizes that I know my body and know when something isn't quite right. He knows I am not a "hypochondriac."
Don't know what immunosuppressant meds you are on, but I am 24 years post transplant and periodically still get canker sores on my soft palate, inside of my lips, etc. I have yet to figure out to treat them. Even talked to my dentist. My nephrologist said it is common for transplant recipients...but no advice.
I’m not sure how low your WBC count is, but I’ve had quite the issue with that which lasted from the first week of Feb through the last week of July this year. I’ll be 1 year post transplant on Nov 16, 2023, this coming week.
My WVC count hovered around 1.6 until they started me on Neupogen injections. At first I had to go to the infusion center 2x a week for these. Then after about a month it was sometimes once a week and sometimes twice contingent on my labs.
After about three months of this with no end in sight, I contacted my insurance company to see if they would cover me self administering the injections at home. While they didn’t cover Neupogen, they did cover a generic version. My transplant nephrologist approved the genetic and they sent a script to my pharmacy. I’ve been administering this to myself at home when the transplant center contacts me after reviewing my weekly labs for several months now. It’s been so much better for me to do this at home! One to two less trips to the hospital (40 min from my house each week. I don’t administer it unless my WBC count falls below 2.0 though.
As far as GI symptoms go, I have IBS so intermittently experience problems as well. When that happens I shift to the liquid diet my GI recommended. I drink chicken bone broth with vegetables blended into it. I roast my vegetables like usual and then put them in my blender which blends and heats this into a soup. For meat I rely on eggs and shredded meat like tuna fish or shredded chicken. Lean ground beef will work too. The idea is to eat stuff that will move fairly quickly and easily through my digestive tract. The animal protein that is in crumbled or shredded form is easier for my system to digest. Low fat (even healthy fats) is critical as is low sugar. When I convert to this diet my digestive tract calms down pretty quickly.
Your mouth sounds horrid… I can’t imagine.
Finally, I, too, am frustrated with doctors just passing the patient around through an unending cadre of specialists most of whom do not work with one another.
When I told the nurse in the transplant center that my doctors weren’t working together (several were contradicting one another), she responded saying that they were. She says they refer patients to one another; that’s how she defined working together.
I literally burst out laughing. After that I said that I expected my medical team to embrace the multidisciplinary approach for which Mayo is known. I said they could emulate this if they tried and that I expected nothing less than that from them. I said that all physicians had to be at the table at the same time sharing knowledge and expertise as well as listening to one another rather than disparaging each other. I ended saying that I was considering requesting that the infectious disease specialist attend all my appointments with the transplant nephrologist just to assure that they are talking with one another. I told her that I expect them to develop one comprehensive treatment plan to which they both subscribe. In the meantime, I told her, I’d defer to the transplant nephrologist for all kidney issues and the infectious disease specialist for all CMV issues.
They’ve been working together better since this conversation. However, I’m sure this will require ongoing monitoring on my part.
You have been through so much this first year! Thank you for the GI advice. I have IBS too. My center is top ‘10 in the nation’ I think they are resting on their laurels however and all they care about is their reputation and statistics. Transplant success rate is all that matters. Patient experience is on the back burner. And Collaboration? Haven’t seen that! Great that you advocate for yourself. I need to do that more!
My wbc count is at 2.8. It did climb to 4.7 when I had the fever.
they don’t start Neupogen injections with me unless my WBC count drops below 2.0 so if your center uses a similar cutoff point, you may not need the injections.
I think all transplant centers are chasing the statistics. It’s big business.
I feel your pain, actually, even though I don't have the transplant - my hubby has it. Anyway, I get canker sores and cold sores! And the best fix in most cases is simple over-the-counter L-Lysine in the vitamin department of stores. It's cheap and available. Simply do a search and check the reviews. Those sores generally disappear! I now take Lysine daily as a preventative. BUT that can be a problem for kidney transplant patients. So make sure you get approval from your team. And, yup, transplant patients usually wind up with low white blood cell counts. There's a minimum threshold you can't go below, but I can't recall it now. I was surprised at how low it was at the time. I really hope you can make those canker sores go away by one means or another, and hopefully have your GI issues fixed too. I'm thinking probiotics might help with the latter since those immunosuppressants can really upset and destroy the microbiome inside the body. My hubby takes a cranberry probiotic, approved by his team, to suppress his utis. The stomach, intestines, bladder and so on are all interconnected, in my view.
only have advice on canker sore.. had a problem with those in about the fourth month after Transplant I am now at my three year adverse remark. My doctor prescribed something called Magic Mouthwash, it has lidocaine for pain,and some other good things in it. It worked wonders for me and I kept it for quite a while. It cleared things up quickly and I used to keep it if I felt the flareup and would just treat with a Q-tip… Good luck on your journey!… It is a true challenge.
how long have you been using it… I think I remember I did it a little more often than it said to, and basically let it sit in my mouth. And I did reply it with a Q-tip often… What I have found on this journey is that everyone responds differently to different things. My son and I both got our transplants from the same person on the same day
(true miracle )he has been virtually side effect free , whereas I have I think experienced every side effect possible lol
A sore that bad??? Yikes. My white count dropped to 1.0 which is very serious and I had to be hospitalized for them to make sure nothing else was wrong—just too much immunosuppressants. I had a bunch of sores all inside my mouth. They prescribed “lidocaine swish” I had to use it to rinse and spit or I couldn’t eat it was so painful. They have to prescribe something for you , not OTC. I have been warned patients who take Sirolimus can have sores. Look—have they tested you for C-diff ??? I picked it up at the hospital! I would press to get that test, personally. You are always free to get a second opinion! Go for it. I’ve heard about “healthcare advocates” but have no idea where to find one to hire.
Thanks! Wow, that is a low white wbc count. How did they bring it up? They tested me for c-diff at the ER. Thankfully the GI thing is resolving. The mouth sore, going on 3 weeks, has a mind of its own taking me to new levels of pain. The good thing is that it’s keeping me from eating sweet treats which I’ve had a craving for since transplant. I’m not taking pred. so I figure it’s from my 9 year old kidney. Lol. I was warned about mouth sores with Sirolimus but I was already getting these before Sirolimus when I was on myfortic. I think every one of the immune suppressants has mouth sores as a side affect and I must be prone to them. I think if I was on prednisone it would prevent them since they sometimes use steroid rinses to treat mouth ulcers. I’m allergic to steroids.
HAAA! I knew it, The drop in white count and sores started right when I was switched from Cellcept to Myfortic. Dr ; “Oh that can’t possibly have caused it, they’re the same medicine, different formulations is all…” SIGH. They gave me injections of what’s called Zarxio (filgrastim-sndz) I think it’s also called nupogen in the hospital and then fought with insurance to discharge me with a supply of it too. I was used to injecting myself with procrit/Epogen for years. Only took maybe 2 shots in hospital and 2 at home until my white cont came up.
I’ve had these Neupogen injections from about March through the end of July. Finally gif my insurance company to approve at home self administration of these injections. That has been hugely helpful.
Thankfully my WBC count has remained above 4.0 (bottom of normal range with my hospital’s labs) since early Aug 2023.
yes, my transplant center had me use that swish and spit solution post transplant too. I’ve had done canker sores since but they’ve been pretty minor snd hsvd resolved in a few days.
Hi there, I am also a kidney transplant patient, and like you I have canker sore. When I did a search on Google on canker sore, everyone saidcanker sore caused by deficient in vitamin B and Iron. I took vitamin B complex (half a pill) every other day, and some iron supplement, and my canker sore has been improving. Before I have new canker sore every week, now I only have them when I stop taking B-complex vitamin.
Note: I am not telling you to take supplement, but that's how I prevent canker sore to develope.
ALWAYS CHECK WITH THE DOCTOR BEFORE TAKING ANY SUPPLEMENTS.
Thank you! I will run it by my nephrologist. Which immunosuppressants are you on? so sorry you are also dealing with this.
I feel like such a whiny baby. It’s just a canker sore, right? My dad’s immuno suppressants caused him to have necrosis in his hips and he spent 11 years in a wheelchair and on crutches until they finally developed hip replacements so I have to keep this in perspective. Transplant is a treatment and as such has side effects.
My transplant center has me taking vitamin B12, Vitamin D3, and SlowFE (slow release iron supplement). Some are to help my WBC count. SlowFE is to help with anemia. I’m not sure if they’re also helping with canker sores or not.
I'm on Prednison, Cyclosporin, and recently switch to Mycophenolate. I didn't get canker sore when I was on Imuran. It only happend after I switch to Mycophenolate.
Note: vitamin B complex dissolved in water, so whatever didn't consume by the body will be pee out. For Iron, overload the body with iron will be DEADLY. I take Centrum (mutiple vitamins) couple times a week, which already has the daily allowance amount for Iron so I don't overload my body with Iron.
Check with your transplant doctor about taking Centrum multi vitamin.
Hi Jamok - I had horrible mouth sores when I first started taking sirolimus. The pain was so different and so much more intense than a fever blister. I had 5 or 6 sores at one time and was not really able to eat. I was prescribed two meds…Dexamethasone (a steroid mouthwash) and Triamcinolone acetonide (a dental paste). Both helped tremendously with the pain and frequency of sores.
It did take my team a several weeks to find something that would work. They began with magic mouthwash, which did nothing.
Biotene mouthwash did provide some soothing relief…and you can get that without a prescription.
I am so sorry you are experiencing this and I hope you find relief soon.
Thanks! I will check again to see if my team will order these. I do have biotine and I got good advice on this thread to let the magic mouthwash sit in my mouth for a bit and that does last longer, but it doesn’t make them go away. I swear it’s more painful once it wears off. I got 4 at once when I was on myfortic. I can’t even imagine 6 at one time!! How painful! Do you still get them? Any thing you notice that triggers them? I only have two right now but the one inside my upper lip is unreal. It increases in size every day. I’ve never had anything like these mouth ulcers before transplant. The current big guy burns, aches and stings and wakes me up at night. Between this and my recent gi infection I’ve lost the five pounds that I worked so hard to gain. This too shall pass…
I was switched from sirolimus/pred/bela to myfortic/pred/bela 2 months ago. I did get the sores up until the time I was switched to myfortic, however, they occurred less frequently and were smaller….and I typically just had one at a time. I was using the steroid mouthwash at that time. I don’t have any sores now.
No, I was switched because for me the sirolimus was causing high cholesterol and high triglycerides that could not be controlled with diet and meds. I tried statins but got hip pain so they decided I couldn’t take statins
Great question, Lisa. Early on when my sores were at their peak, my levels were 11-12. My dosage was tweaked which resulted in a trough level of around 7-8.
I had the canker sore issue. I used the Oragel mouthwash 2 or 3 times a day and avoided spicy food. It finally calmed down. If I feel like I’m getting a canker sore I start using the mouthwash again. Mine were all on the inside of my mouth. Really painful. You can just get weird viruses from being immunosuppressed. My doctor said she could prescribe something, but I don’t want to take more meds unless I have to. Hope you get it under control.
Thanks! I have been using that mouthwash. I’ve also tried magic mouthwash, Benadryl with milk of magnesium mouthwash, oragel gel, kanka gel. Added b vitamins, lysine supplements. It just won’t budge. I have named it Damian…
I feel you.I was put on a regive of iv forscarnet to fight a cmv infection for three months and they were pure hell.Non stop diarrhea 24 hours a day every hour,coukdnt eat as soon as i tried with 5 minutes on the toilet, absolutely destroyed my intestines and i lost 35 pounds.They were no help except the attitude of suck it up. Im finally off the forscanet but it raised my creatinibe doubke,destroyed my pottasium and still hacing bowel ussues,not as bad but still living on buscopan,loprimide and probiotics and at least have been able to start eating and just get cramps diarreha 3 tumes a day,byt yeah theese Dr"s just dont give a shit what a person goes through.
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