Low WBC and goodness knows what else.

[Ladybug_05]

Hey all, just need some good vibes please! I'm currently 5 1/2 months post transplant, and my white blood cell count has been on a steady decline for the last few weeks. I take Azathioprine for WBC suppression, as the Mycophenylate medications wrecked my gut for the first 3.5 months. It was expected that my WBC could be lowered due to the medication, so I didn't panic when it went below 3 (minimum is 4 but my book said to worry if below 3), just notified my transplant team and they've been watching it for the last 2 months. Well, now that it's so low (went from 2.0 to 1.5- as of Monday it was 1.05) I've been getting labs done 2x per week, which hurts a lot (no matter where they poke) and there's no progress. On Thursday I get to get labs drawn again, on top of getting a shot either that same day or the next day to stimulate WBC creation.

Not only that, but I'm absolutely exhausted- like sleeping for 15+ hours per day/night because I can't stay awake. If I am awake, it's a foggy, slow-moving and constantly yawning type awake. This has been since about 2.5 months post as well. It started off as "oh you had a major surgery and you're lower on steroids, so it's normal to have this type of exhaustion," but now it's "this isn't normal. Talk to your other doctors (PCP) to get this figured out." Mind you, I've had fatigue/exhaustion issues since I was 13 and in CKD stage 3, so this will be fun. I have labs for those as well on Thursday, but the doctor I spoke with even mentioned how my labs could be skewed due to me being post transplant and before 6 months post.

The first few months was pretty crummy as it was between having severe side effects of tacrolimus and prednisone *which I still have* and being ill with infections just because my immune system was shot as it was. Being told "it will get better" is slowly becoming a pipe dream, and I am struggling with handling it all while trying to go back to school via online classes. My family has been as supportive as can be, but it's hard only delivering not so great news after something that's supposed to have saved my life. My donor was my step sister, and I already feel horrible with her seeing me like this since she was under the impression that I was going to be so much better after her donation and I'm not. This is also taking a toll on my relationship with my boyfriend since I need help all the time and I'm not in the best mood, so it's becoming a lonely place despite seeing my therapist and keeping myself in as decent of a place physically and emotionally as possible.

Sorry it's so long; sort of an emotional word vomit into this post.

[Bassetmommer NKF Ambassador]

HI Ladybug,

I am not knowledgeable about transplants and the recovery. But I do know this from your other posts. You are a warrior and I believe you will get through this. Stop worrying about how others are feeling about your issues. You have been through a lot. Tell your step sister thank you over and over. I am sure she will understand if you explain that your body is fighting the insertion of a foreign body but that in time, it will be ok. And talk to your boyfriend to see if he gets what you are going through. This is quite a lot for anyone to handle, but don't let anyone make you feel like a burden.

You might want to sign up for a Peer Mentor. They will match you up with someone who has had a transplant and might have similar experiences. It is really a nice thing to do and know someone is in your corner.

Here is the number 855-653-7337 and here is the website to sign up kidney.org/patients/peers

[KidneyCoach NKF Ambassador]

I've been on dialysis over 17 years with no transplants so my know8of that specificity is none. I will say keep communicating with your team including transplant team, step sister and your boyfriend. Tell them what you've shared here. Be open about your fears and concerns. Apologize for moodiness while placing some of the blame on your meds. The worst thing you can do is shut them out. Openness and honesty shared with kindness will go a long way. Follow your transplant teams guidance. They worked with loads of people in your situation. They have the training and experience to help you. Many Blessings

[WYOAnne NKF Ambassador]

WOW! You have really been through it Ladybug!

My WBC was also low after my transplant. However, mine never got that low. I did wind up back in the transplant center twice those first 6 months. Due to low WBC, I caught a couple of infections. My dose was reduced of one of my transplant meds and my WBC got better. Hopefully your transplant team can figure this all out and work it all out. I know the immunosuppressants are what makes your WBC low, but not sure why yours has really dropped. If it were me, I would really be bugging my transplant team for help. See what your labs are this next time.....and then really "PRESS" these doctors for answers and how to get better!!

Keep the faith! Let us know how things are going after your next set of tests.

[Ladybug_05 in reply to WYOAnne]

I involved my parents/support people and the docs decided to move up my appointment to this Monday afternoon. I had a bunch of labs done this morning as well, so we'll see how it plays out.

[WYOAnne NKF Ambassador]

I will be thinking of you and wish you the very best!

You need to get where I am.....traveling and really enjoying LIFE!

[Ladybug_05 in reply to WYOAnne]

That's the goal. I'm hopeful that my medical team and I can get to the bottom of what's going on. My gut has been saying that something's wrong for months, but of course they didn't listen until now. At least they're listening right?

[WYOAnne NKF Ambassador]

Yes, listening is good!!! Just do NOT let them brush you off! Stand up for yourself and make sure they continue to listen to you and do something. This is not normal for your WBC to be that low.

Lets hope Monday they will know what is going on and help you!

I'll be thinking of you!

[Jayhawker]

When my doctors were having trouble figuring out what was going on with the many symptoms I presented about 6 years ago I created a “graphic organizer” showing all my symptoms. I then took it to each of my doctors’ appointments for about 18 months, until we got everything addressed.

The graphics organizer was an outline of a human body. I pulled this off the Internet.

I then listed each of my symptoms on the right side of the page. I drew arrows between the symptom and which part(s) of the body it affected. (This looked like when you identify parts of the frog as you dissect it and document that in biology lab...)

I then developed a coding system and coded each symptom. My coding system had four codes:

1. Resolved

2. No Change

3. Improving

4. Deteriorating

So I would code each symptom on my organizer before each visit.i then asked the following questions in each visit as my doctor looked at the graphic organizer:

1. Which symptoms do you believe are most likely NOT related to what you’re treating?

2. Which symptoms are most likely related to what you are treating?

3. Which symptoms could be related to what you’re treating—but may be related to something you would not be treating?

We then would focus the appointment in the symptoms that related specifically to what that doctor was treating. The question of asj at that point was always:

1. Is there anything we can do to improve or resolve the symptoms related to what you are treating?

I then had a box fir each of my doctors on the left side of the page. In each doctor’s box I listed the symptoms the doctor was addressing and what specifically the doctor was doing to address the symptom, eg, medication change, dietary change, etc.

I then shared this graphic organizer with each doctor in my medical team. They each got an updated copy in each appointment.

It took about 18 months, but we did get everything figured out and addressed.this also really facilitated communication across my doctors. They actually began reaching out to one another and conferring about my case—functions like a team although they each worked for different medical groups.

I think they found it a little humorous at first. But as I came back to the next appointment with symptoms improving and more resolved, they began asking if I broughtt the graphic organizer in ...

Anyway, I hope I’ve been able to describe this well enough for you to picture it. I also hope this may give you s few new ideas regarding how to try to get your symptoms addressed...Alrhough, what you’re experiencing may be much more complicated than what I was experiencing at that time.

Jayhawker