Pre transplant information.

[A-A-B-J]

I think the transplant team could and should inform persons facing transplant what all the side effects of future meds can be so it isn’t such a total shock when dude effects occur. I’m seeing my doctor tomorrow and I am going to recommend that they be more informative. It might be my lady appointment as I might be referred back to regular nephrologist. Kind of scary thought not having the transplant team monitoring.

[OperationKidney]

My transplant pharmacist did inform me, and often primary care & nephrology doctors are also in my experience. I'm sorry you didn't get the information you needed & wanted and I'm proud of you for advocating for yourself and others!

[A-A-B-J in reply to OperationKidney]

Thank you for your reply. It made me feel better. Take care and Blessings on you.

[Okiksaints1955]

This work bothways.

You first have to research, study and learn.

1. What to expect before, during and after the transplants. Risks, complications, side effects, rejection, etc of transplant. Advantage, disadvantages compared to dialysis vs your ultimate goals and financial capabilities.

2. After surgery tests , frequency, understand what they mean. What are the barometers, baselines, ranges, trend, etc, why they keep moving up or down, better or worse. You will have to live with lifetime of never ending tests

2. What are the medications and what they keep being adjusted. What are the side effects of medications (from reading the medicines particulars, google, forums, etc.) You will have to live with a lifetime of medications and adjustments that goes with changing tests results.

Create a binder so you're sure to cover all and remember.

You will noticed that one medicines alone has an endless list of side effects. Understand that if you want your medical team to discuss each one, this will require a lot of time (and cost if they charge by the time spent)

And finally, understand that not all side effects will manifest (each body is unique). And not all side effects are written somewhere - your medications from other medical conditions can affect potency of your kidney meds. And there are also surprise side effects that no one told you or you've never read (I had a handful of these puzzling ones)

Once you have all this knowledge, then you will know the appropriate questions to ask. And then you can determine if your Medical team is giving you appropriate response or BS. If the latter, don't hesitate to question them. And if are still getting a run around - time to change medical team to one where you get the proper care you deserve.

I understand, this is a lot. But in order to make the right decision or choice for yourself (you will have to live with your decision), you have to be properly educated also. Afterall, this is your new life (a new normal) you are looking forward to.

Hope this helps... Take care and be well.

[A-A-B-J in reply to Okiksaints1955]

I understand it works both ways. My life is full of caregiving for a loved one and helping raise several grandkids. Plus my husband had a stroke several years ago. Many days I have no time to do anything at all but survive the best I can. I thank you for your information as yes it was something I should have done even if it was after my transplant.

[Okiksaints1955 in reply to A-A-B-J]

Hi AABJ,

Yes, it is also a matter of choice and priorities. What is more important in life.

I have referred a kidney patient with stage 4 CKD to my Nephrologist and his team. He left a Nephrologist who has not been doing a good job (he was asked to start dialysis in 3 months with very little discussion)

When he became comfortable now that he is using my Nephrologist, he just follow his lead. Never ask too many questions. Just happy he is better taken cared of.

I hope I did not offend you and hope you get better medical care.

Take care and be well.

[Parkerbarker in reply to A-A-B-J]

Hey dont know what utopia that okiksaints is living in but im with you.i have medical knowledge,did what i thought was enough research and asked questions i could but still was kicked in the ass by transplant meds and questions please i could barely get 2 words out of my main transplant doctor and having to advocate for myself constantly.change nephrologists! Yeah right in my small community they all work together and nobody wants to step on nobodies toes.if you have questions ask me i know now after learning the hard way.

[LBatl]

Couldn't agree more...

[WYOAnne NKF Ambassador]

I don't think the transplant team tells you all of the side effects of immunosuppressants because we are all different. What affects one person may not bother me at all. My transplant team expected me to tell them of any issues I was having.My transplant center, U of WI, takes care of you for life. That being said, we moved to WY and of course there is no transplant center here. Since I have been stable for over 20 years I see my local nephrologist quarterly.

When did you have your transplant? Is your creatinine stable? At your next appt. you should ask what there expectations are? If they release your care to a local nephrologist, you should tell them of your concerns...

[Eyak1971]

I went to several workshops sponsored by the hospital before my transplant but they seemed to center on transplant success stories rather than the everyday problems that transplant patients face their first year. Which is why this forum is so important. The pros and cons of dialysis and transplantation is something you either research before it happens or experience afterwards. It would be great if the kidney foundation would create a video to distribute to doctor's for their patients rather than overloading them with pamphlets. Thanks for approaching the topic and take care. As my post transplant time increases I feel more content with my decision. I just wish I had it when there was no covid.

[Parkerbarker]

agree totally,the side effects and recovery have been pure hell dor the last three months.diarrhea numerous times a day to point where i cant leave the house.so tired cant even do housework or anything.nausea headaches,i never expected it to be this bad and little help from transplant team.was like it was all about doing the actual surgery then afternoon not so much

[horsie63]

I have to say KU Med has been wonderful in my pretransplant phase. Before the first evaluation they sent me a video that me and my caregiver(s) had to watch that covered all of the pre and post transplant steps. At the eval they provided me with a list of potential meds I'll have to take and I could use that and drugs.com to learn of side effects.