New kidney precipitant - 4 months post - Kidney Transplant

Kidney Transplant
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New kidney precipitant - 4 months post

Jenny0604
Jenny0604
40 Replies

Hi everyone,

I'm new here. Nice to know this is out here! I am 4 months post kidney transplant. My wonderful husband was my donor and we are both doing really well. My new kidney is working great, however, I'm having a hard time dealing with some of the side effects from I believe is the prograf. It's been an emotional roller coaster. I will have weeks were I start to feel great then my meds get adjusted and I start to feel like crap. I was fortunate enough to skip dialysis and go straight to transplant. I know it takes at least 6 months to level out all my meds, but I'm just having a hard time dealing with it all. It's very overwhelming at times and I'm looking to connecting with anyone who has been been there.

Hope everyone is doing well.

Jenny

40 Replies
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Jenny0604

I meant "recipient" obviously. haha

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ToddGiles

Hi Jenny, so glad your husband was able to be your donor. I donated a kidney to my son 3 1/2 years ago and in the second year he was having som toxicity to the prograf and Stanford doctors put him on a low dose of prednisone and lowered his prograf which helped him feel much better. Hope this is helpful.

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Jenny0604
Jenny0604
in reply to ToddGiles

Thank you Todd. I am currently on 5mg of prednisone, but I believe it's my prograf that I'm having a hard time with, too. They lower it then increase it then lower it then increase. But, I know I am still being adjusted and will eventually find my maintenance dose. I am looking forward to them lowing my prograf, hopefully. Thank you for reaching out. Going through a rough patch right now and I appreciate it!

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ToddGiles
ToddGiles
in reply to Jenny0604

You’re welcome. Hang in there, it took my son a couple years to get it right. Wishing you the best!

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Jenny0604
Jenny0604
in reply to ToddGiles

I hope you son continues to do well!

1 like
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Patient-Empowerment
Patient-EmpowermentNKF Ambassador

Hi Jenny,

You're right about the med's. They can be tricky. What is your transplant team saying? May I ask what type of symptoms you're having? Emotional or physical discomfort, or lack of energy?

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Jenny0604

Hi, mostly emotional and some discomfort. I believe it's the prograf. They are trying to find the right dosage for my current maintenance (which I know will change again at 6 months) level so it's been a lot of ups and downs. Right now I'm on 5mg a day and I can tell that's probably too high. I'm hoping the prograf level reflects that in my blood work and they can lower it to where my body can metabolize it and it won't build up. I've also noticed I'm having more hair loss than normal. That's hard to deal with. Everything else is going really well. My kidney is functioning perfectly and I'm so thankful for that. I know it's just all part of the process to get back to a normal, healthy life but it's hard and no one really talks about that part before transplant. Not in my experience anyway. I hope it's different for others. :)

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Patient-Empowerment
Patient-EmpowermentNKF Ambassador
in reply to Jenny0604

You're right Jenny. Not much discussed before tx--and as you point out, we are so grateful for the gift, that these types of side effects seem insignificant in comparison. But you are correct on all accounts. There needs to be more "Patient to Patient" sharing of experiences. I, too, have more than normal hair loss. I've learned to work with a shorter cut and different styles, etc. I found that taking meds with food, (as opposed to taking on empty stomach), can help when levels are a bit too high, but not high enough to mess with amounts. Either way, make your habits consistent, so you maintain levels consistently. Hope this helps. Be well and stay in touch. You are not alone!

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yahoo999uk

Hi Jenny

I am 6 months post transplant and like you I was fortunate not to need dialysis before transplant. My donor was deceased. I too have had ups and downs over the past 6 months mainly due to wild swings in my creatinine level, but now my consultants seemed to have adjusted the dosage of meds to the optimum level. I too have had up and down days and my wife is not shy in telling me to buck up. I am sure as time goes by you too will really start to enjoy life

Stanton

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Jenny0604

Thank you so much Stanton. Your words are very comforting and give me hope! I guess I didn't expect the process to be this difficult at times. I'm sure my husband is tired of my emotional ups and downs, although, he has been very supportive, I can see his frustration at times. It's nice to hear there is a light at the end of this tunnel. Logically, I know it's going to get better, but sometimes when you are in the middle of a tough time it's hard to remember that.

Thank you for reaching out.

Jenny

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NeedingAdonor

Hi Jenny, Thank god you didn't have to go on dialysis. My fiancé is in need of a transplant and doing home dialysis for about 7 months and it is hard although he still holds down a full time job. If anyone out there knows where I can get the word out he needs a donor or knows an influencer with lots of social media followers that would be awesome. I will do 2 hours a day for the new year getting the word out. Jenny stay strong and many prayers to you. You can do it. May 2018 see each day better for you!

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Jenny0604

Thank you for the prayers. I'm doing much better since my first post. Still some ups and downs but they are less and less. I truly hope your fiance receives his kidney real soon. I will keep him in my thoughts and prayers. He is a fighter and a warrior! I never experienced dialysis, but I have family members that have. I realize how blessed and lucky I was to be able to skip that. Tell him to stay strong! His time will come! I hope 2018 is his year!

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NeedingAdonor

Thank you so much for the prayers. As he is a talented engineer, he keeps getting up at 5am each day. I think it helps he has a purpose and kids to keep him motivated. It can be so draining and tiring. It's like having surgery side effects daily. The whole transplant process is time sensitive. IF anyone has any ideas on how to spread the word expoentially on social media, I'm all ears. Really need an influencer with many followers to help get the word out. Jenny, you can only go up from here. Please God help those in need and ease their pain. Together, we can all do better. Take very good care and spoil yourself please.

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Jenny0604

Thank you. :)

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Bonnet8

Hello !!! You need to use social media to get the word out. That is how I found my living donor. She is from another state!! Please reach out to your friends and ask them to share your story. Praying for you both .

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Maddisson

Jenny- I find walking helps a lot - a minimum of 6,000-7,000 steps a day. I feel physically better & much happier. It also will burn off the extra blood glucose/lower bp.

Much luck to you & hope it all settles down soon for you.

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Jenny0604
Jenny0604
in reply to Maddisson

Maddisson, Thanks for your reply. I think things are finally starting to balance out. I'm about to hit my 7 month post transplant date on Jan. 6th and so far so good. The side effects are starting to become less noticeable which is also nice.

And I agree! That is the best advice! I have discovered that walking or some kind of good physical activity helps tremendously! I try to walk at least 3 miles a day or do a run/walk. It also helps my mental health so much! I, too, feel so much better and happier during the day after I exercise. I can certainly tell a difference when I don't exercise or I'm not physically active.

Thanks for the well wishes!

Jenny

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NeedingAdonor

Jenny you are in my prayers again tonight. Thank god you didnt do dialysis. Everything will be fine. The 6 months of highs and lows will subside and go away. Its normal what you are going through to get back to you! Take care please!

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WYOAnne
WYOAnneNKF Ambassador

It took me almost a year to adjust to the meds. I got over the emotional part pretty quickly, but had a lot of gastrointestinal issues - if you know what I mean. It takes awhile to also get on the right dose of the immunosuppressants. Transplant clinic also found I did better and felt better taking name brand of these meds rather than generic. Generic, even though basically the same med, can have slight variables. So I take Neoral & Myfortic rather than the generic cyclosporine & mycophenolate.

So, make sure you continue to let your transplant team know how you are doing. Remember, you need to be your own advocate. You don't need to be silent about the side effects, because there are things they can do to help. Good luck on this journey!

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Gotthecall_123

Hi my name is Dave i’ve been there seven years on dialysis didn’t think I was going to make it this far I have a transplant eight months ago I’m feeling pretty damn good I do have a few side effects sensitive skin balance and like you said emotional roller coaster half the times I think it’s in my head I just can’t turn turn it off feel free to ask any questions at all I’m here to meet new people new friends and to stay part of the community 🙏🙏😛

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Bonnet8

Hi there!! I am a transplant patient like yourself. Unfortunately, I have side effects from the meds. I also feel as if I am on a roller coaster of emotions. I feel anxious and anger easily. I'm finding this a struggle too. Anything you suggest?

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Gotthecall_123

Hi again😝 So far ive been trying to manage my mood swings by talking to a Counceler it helps a bit and my emotions seem like they have a mind of thier own,often i feel alone but i try to occcupie my self with something and it seem to take my mind off how i was feeling the other night i was watching a movie and all of a sudden i was holding my self back from crying i dont think it was nthe movie it was my similar exspearance but couldnt hold it back i had to get a tissue to wipe my tears 😧🙏😝

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Bonnet8

I also feel as if my emotions are on a roller coaster ride. Now, to top it all off, I can't fall asleep !!!!!! ☹️

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Gotthecall_123

Ive had problems sleeping for years i kept asking doctor and complaining to nurses hounding them to give me something finally they did 🙏after that they took me seriously😝 im still using a sleeping pill today. But you know what helped me a lot is MELATONIN 10 mg you can get it over the counter its all natural 💪🙏😝

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Bonnet8

Sorry to repeat myself, but they will not allow me to take anything ☹️

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Gotthecall_123

Hi i understand i was just saying what i had to do to get some meds doctors these days dont want to prescribe anything addictive hope all is good🙏😝

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Bonnet8

Would you mind sharing the meds your dr allowed. Maybe I can talk to my doctors about them . Thanks 🤞

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Gotthecall_123

Hi bonnet since my transplet im on Mirazapine .5 amd Amitriptyline 10 mg times 2

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Bonnet8

Thank you so much for the info. I will speak with both teams at both hospitals . Again, thank you for your response. May I inquire if you were also on Valcyte?

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Gotthecall_123

No wasnt on valcytev but i had malor issues withsleep and anxiety they had me on many different meds to find out what worked for me at one point they had me anti physcotics that messed with my head i was having realy bizzar dreams would wake up covered in sweat didnt do that for long😫

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Bonnet8

They had me on Alprazolam, but one of the other drugs is blocking it's effectiveness. Then I was put on Paxil- still no benefit. This is so frustrating. I feel as if electricity is running through my body and this keeps from sleeping more than an hour or so. I am just so tired. Thank you for your help.

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Gotthecall_123

I haer you imstill having issues withsleep to this day the meds i have are losing their effect to make things worse ive had tinnutin for 4 years 24/7 that keeps me up also its enough to drive you mad🤪but ill just deal with it as long as my kidneys are functioning hope they can help you im going to talk to my doctor AGAIN and start all over again frig 🙏🙏😝

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Gotthecall_123

Have you ever heard of Melitonin ? After my transplant someone suggested it to me its a natural supplement it works realy well i was suprised becaus ive been on a lot of different sleeping pills and anxiety meds once i tried Melitonin it was the first time in years i got a good nights sleep 🙏🙏😝

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Bonnet8

Good luck 🍀

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lovelywife

congratulations! This is what Im hoping for. straight to transplant, no dialysis. my husband was tested last week and awaiting results!

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Jenny0604

Wow! That is amazing! I know you posted a month ago, but I hope all the testing went well! Contact me anytime. Receiving a kidney from your spouse is a beautiful thing between the two of you, but it can also take some adjustment since you both will be recovering at the same time. And if you have kids (like we do) that was an added stress. But everything worked out well and my husband and I are doing great. I wish you well!

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Jenny0604

I haven't been on in so long it was nice to read all the replies on this thread. I just passed my year and a half mark...I'm actually 1 year and 9 months. I am feeling great. I recently changed from my pro graf to Envarsus. It is a 24 hour release of Tachrolimus and the peaks of the meds are much more manageable. Most days I don't feel anything. Sometimes at night or when I'm really relaxed like watching tv, I still do feel somewhat of that "electricity" but nothing like before. My sleep seems much better, however, still wake up some nights. And my hair has been growing back since last June (for those with similar hair loss experience). My kidney is working wonderfully and I've been running again hoping to complete a half marathon by end of the year. Being active has been a huge part in my mental and physical recovery. Even if its just walking or riding my bike. Didn't have to be running.

Some days I have those emotional days where I can't figure out why I'm so anxious and aggravated, but then I remember its probably my meds. I've had fewer and fewer days like that so I'm thankful. I almost went on anti- depression medications, but I was able to get through it with counseling. It was super hard, but I did it. I feel much better now and when I get those occasional bad days, I've been able to work through them better now.

I wish all of you well and for happy, healthy kidneys!

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Jenny0604

By the way someone mentioned Melatonin. I'm gong to ask my doctor if I can try that. I also heard that it works well for sleeping.

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JackieShan

Hello. I came across these posts because I was looking for how people feel 4 months post transplant. Thank you to everyone who has contributed; your posts have been very helpful and reassuring.

I am nearly 4 months post transplant and, like many of you, suffering from the side effects of the medications. I am on Advograf, Myfortic (replacement for Mycopholate Mofetil), predisolone (down to 5mg), just completed the valganciclovir (to stop recurrence of cmv), co-trimoxazole, ranitidine … and others, but these are the main transplant related meds.

The main issues are the gastric-intestinal side effects, rendering me having to stay at home, or close it home, all the time - the change to Myfortic helped this a lot, but still having side effects without the severe stomach cramps. More recently, I have also had some sort of tremor; Advograf has been reduced from 12mg to 8mg, but tremor still present some days - it feels like your insides are shaking!

I just wanted to say that, although it sounds a bit unkind, I am reassured that these side effects are common and that, although they last quite a long time post transplant, they do settle down in time.

This was my second transplant; the first was 21 years ago - I had lupus. The first came from my bother, and this recent kidney was donated by my 30 year old son - words cannot express how much I love them both, and how wonderful they have both been to offer these gifts - I even told my son that I did not want him to donate. But actually, the process was much simpler, far less invasive, and more routine that it was 21 years ago - not taking from him because it was still a massive sacrifice, but just mentioning that I was feeling very emotional about him donating so it was reassuring that the op was minimally invasive.

Of course, the side effects are minor compared to the gifts that we have all received, as many have pointed out - but it is good to be able to discuss them with others with experience, and has made me far less worried.

Thank you all!

Jackie. (UK)

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JackieShan

By the way … I don't remember having these side effects after my first transplant; I was on cyclosporin, azathioprine and much higher doses of prednisolone - the cyclosporin made me hairier and gave me a slight tremor sometimes (but not has powerful internally as the Tacrolimus tremor), I think the azathioprine caused me to be chronically anaemic, and I am sure that everyone knows about the side effects of the prednisolone - fat and hairy!

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