Follow up care

[jstx]

I have read on here that some people are having a one month follow up, then 6 months, 1 year, and 2 years.  I have my initial follow up appointment next Monday (the 20th) which will be two weeks after surgery (Hopkins does a 1 week post discharge check up if you go back to the transplant center, but a 2 week check up if you go home to your own PCP....) but then I thought my next follow up would be 6 months out.  Is there a standard one month follow up?  Is this mandated like the 6 month, 1 year, and 2 year appointments?  Just want to make sure I'm staying on top of things and don't get overlooked for regular testing.

Jocelyn

[Prelude_Sarah]

Hey Jocelyn!  From what I understand, the only mandatory check ups for a transplant center are at 1 week, 6 months, 1 year and 2 years.  I did have a check up at one month, but that was with my PCP.  I think my doctor was just a little curious about what my creatinine would do after one month being out.  My creatinine went down from 1.19 the day after surgery, to 1.13 at the one month point.  So for me, it was really good news.  But, I think one reason transplant centers don't do one month check up as a standard is because they expect that your numbers wont be that much improved at that point - I could be wrong about that though.  Hope that helps!

Sarah

[sherri]

I had a 3 week post op check ( Thanksgiving fell on clinic day so it was pushed off a week). I guess they gave you the one week because you had to fly home. Then I did 6 months, 1 year and 2 years. Don't wait for Sharon to call you. "Grandma" might take her time. I always emailed her and asked her to put the order in for me to do the bloodwork at Hopkins. Sometimes it was there, sometimes not and I had to wait or come back. She always wanted to mail me a slip but I told her I preferred to do it there. At least I know it was on file and could be easily accessed for follow up.

[jstx]

My mom jokes with me that grandmother really likes me...she came to see my in the hospital multiple times a day and has called me several times since I came home....did she do that to you too?  Or to any other donors that you know of?  So far she seems pretty on top of my follow up work.  My PCP said she's already received the fax and commented on how organized Hopkins is.

[sherri]

Sharon is great about answering emails and communicating with your physician etc. At the time, I felt like she was very "maternalistic" in the sense that she would tell me what she thought I needed to know and I shouldn't worry. I have so many emails from her asking me why I am worried and telling me to stop worrying. At my follow up visit I did my blood and urine and then went up to wait at the clinic. She came in to tell me that everything was fine. I asked her what my creatinine was and she said that just the urine was back and it was normal but the blood work wasn't in yet. She'll let me know if it is abnormal. So why did she say everything was normal when the test wasn't even back! So in my mind I didn't know if everything was fine. I was and am a worried type of patient. I wait with bated breath for each number and to me it has to be perfect or I begin to worry. By her telling me everything is fine and I shouldn't be concerned, let the professionals deal with it, I felt patronized and my feelings devalued. I felt like they were keeping information from me (because she may think this is the way to get her to stop worrying) instead of sharing and building trust. On my 2 year visit my creatinine was abnormal. It had jumped to 1.4 and I panicked. I wanted to speak to a nephrologist and Sharon said, I can ask her any questions, she will ask the nephrologist and then get back to me. I just wasn't a good match for her because I wanted to be overly involved and I think her way of nursing is, the patient doesn't need to know the details just the medical professionals. She means well, and is very conscientious about getting back to patients, following up etc. We just may not have meshed. And maybe she does like you better. Remember I was the doubting donor who really wasn't gung ho about this. Not what they are used to. Their donors usually can't wait to have their organs cut out. 

[Orchidlady]

Make sure you fully understand the the check backs and also who is paying for it. In our case, my husband was under my insurance, and my surgery and follow up was covered by his ESRD Medicare which we had as secondary. Medicare paid for the two week check up and a 4 month out blood work to use as a baseline - period. In fact they specifically told me the window in which I was to get the bloodwork, because if I went past that time Medicare would not pay for it. They did advise my doctor the blood work that is to be run annually, and a copy is to be sent to the transplant center so they can keep it and track it. However, it is my own insurance that pays for that. When the donor is under private insurance of the recipient, I think it is much easier to fudge in a few more paid check ups for the donor. Not the case with Medicare.

[jstx]

Thanks for the info everyone.

And Sherri, I doubt she likes me better...my mom just gives me a hard time because she was always visiting and calling.  Good to know she's on top of things and is quick to return calls/emails for everyone.  She does say that she loves working with her patients-they are heros!  I thought that was sweet.....I think you are probably right about her thinking the patient shouldn't worry and the professionals should be the ones to take care of the details (remember how long she's been in nursing)...not saying I agree with that at all-I want copies of all my number and want my personal doctor to have all the info as well...I'm still trying to learn what all the numbers mean and the important targets to watch.  But that may just be what she's used to and the only way she knows how to operate.