Clinic Results

So today I had my follow up clinic appointment. It really didn't go as I expected. Here's the scoop:

My PFTs dropped a good bit from last time. When I looked back at my previous ones, they were actually about the same (with the exception of last time), but are still much lower than they need to be. They were 37/36 and last time they were in the mid 40s. So this concerned the doctors a good bit. The rest of my lab work was pretty good. HCT and Creatnine are really good. Mag was low, but not too bad (normal for me). WBC count was up to 3.1, which is much better. So at least that is going in the right direction. It's still low, and lower than its ever been since transplant, so it is still putting me more at risk for catching stuff.

At the time of clinic, my prograf levels were not back yet. And I never heard from my coordinator today. So either my levels are fine, or she forgot to call me. I'll probably touch base with her in the morning just to make sure, since I remain nauseated and have no appetite.

While I'm feeling better, I'm still very fatigued and "run down." I'm still somewhat SOB, and have not felt like eating much at all. While the doctors are concerned, they still don't' know what is going on. A couple of them think that I still might have had or have a slight/mild case of Mono, and these symptoms could be from that. Others just really aren't sure. One possible theory is that my immune system is so suppressed right now, that my body can't fight the littlest cold, and is therefore making me feel very fatigued and sick feeling.

PLAN: They want me to have a bronch done within the next two weeks just to make sure all is ok. When PFTs drop and stay consistently low, that is usually the 1st thing the doctors want to do. Although with me, I don't get bronched routinely, and have complications somewhat with my bronchs, so they don't automatically jump on that decision. However, they feel it is definitely necessary right now. I don't mind getting bronched, it just puts me out for at least 2 days, so I am not looking forward to missing more work or more school.

If the bronch doesn't show anything, then they brought up the subject of taking me off either one of my immunosuppressant drugs or the stop the photo treatments. I'm currently taking 3 immunosuppressent drugs (Prograf, Rapamune, Imuran), Prednisone, and doing the photo treatments. So my immune system is extremely suppressed right now. So their theory, is that maybe if they discontinue something, my immune system will regain its fight some and that I will feel better and have more energy. But that will be a decision that everyone has to agree on. It seems like things need to be balanced. On the one side, you don't' want your body to reject the lungs. But on the other hand, you don't want your body to stay so immunosuppressed that you keep catching things and feel sick all the time.

I'm going to also undergo a few stomach tests to make sure I don't have any acid or reflux issues. I've been through multiple tests before, and everything is always fine. I got another "lecture" today on how sometimes you don't' always "feel" the reflux, but it can be causing problems, especially with transplant patients, which in turn can make you have trouble breathing,be fatigued, etc. I refused 2 of the tests they were going to redo, but agreed to another one, that is less invasive.

The team also decided that I needed to be followed more closely in clinic and not once every 3 months. Although, I usually end up going at least one other time in between that 3 month period anyway. So they want me to return to clinic in 2 weeks, and have the bronch before then.

I feel like I'm being experimented with. It's getting SO SO FRUSTRATING and I'm tired of being tested for all these things, and yet I never get an answer. I know the doctors wish they had an answer too, and I will do everything I need to do to get an answer. It's just really hard sometimes. I've been subject to this my whole life with CF. And when you get a transplant, you expect to be relieved of this stuff for the most part. Normally, you don't have all these complications post tx. But then again, I still wouldn't trade them for anything, because I am still so thankful that I am just alive today and able to live a much normal life than pre-tx.

Please pray for answers and that all these upcoming tests will go smoothly over the next month or so. While I don't want any tests to turn up positive, a positive result would mean an answer and possible treatment to feel better. It's a difficult decision. Please pray that I am able to keep up with my school work and still be able to work and continue with my daily activities.

Christie was given the clear to go back home to Tuscaloosa today. She will return once a week for clinic visits. I know she is thrilled and will recover much more quickly and comfortably at home.

Results

This morning I went for labs...ah..such a pain when you don't have any veins. It took 2 sticks to get enough blood and the final stick was in my wrist where they get blood arterial gases...

Anyway...here are the results:

Prograf: Still WAY WAY high...which explains my nausea and shakiness. So I'm decreasing my dose and will get it rechecked next week at clinic.

Magnesium: 1.6...which is pretty good for me. You would think it would be higher though after 2 rounds of IV mag.

HCT: 36---WOW!! I don't think I've ever had it that high. The blood must have done some good...to bad I feel like it's a "2" instead!

Kidney Function: A little elevated, but more than likely due to the high prograf level.

WBC Count: 2.4-which is up a smidge..but still wish it was higher. That's still pretty low. But I don't think they are too concerned now...it depends on which doctor you talk to.

Parvo results: My coordinator said, that they are NOT completely sure it's negative. The doctor yesterday got her to order a follow up test on it. So now, I have to wait for those results. FRUSTRATION with a capital "F."

I have had ZERO energy today. I woke up this morning feeling like I had been asleep for 5 minutes. I had to get up at 5:30 to get to labs early so I could get back to work as close as to 8:00 as possible. I dragged throughout the whole day. Boy...I would give ANYTHING for energy!

Last night I fell asleep in my bed while studying for my midterm tonight. I didn't quite get everything studied that I need to. Evidently, I left my highlighter opened and it bled through my sheets and left a nice yellow circle. As I've been told, I fall asleep in the middle of studying and doing school work quite frequently. HINT the pen marks on my sheets and comforter.

Christie, my CF transplant friend, is doing great! We saw each other this morning while we were getting labs. She made a cute joke earlier today that we should just build a condo on top of UAB....(since we are both there so much). I thought that was pretty funny...but so true. I feel like I live there 1/2 the time (which is NOT supposed to happen after transplant).

Oh well....back to studying...not looking forward to the midterm...wish my luck...or rather pray that it goes well. I know I need it!

Parvo Virus

Today I had to go my coordinator's office to get a school excuse, in order to make up an exam I missed last week. I was already at UAB doing my clinical and visiting several CF patients, so it was very convenient. While in her office I asked her if the results from the Parvo virus test were back yet. There were...and it was somewhat interesting. Evidently there are two immunoglobulins (IgM and IgF) that indicate whether or not you have the virus. One of them, indicates if you have it actively, and the other indicates if you have been exposed to it or had it in the past. I don't know a lot about this, and probably need to research more. These immunoglobulins are triggered probably by the antibodies in your blood. Evidently, the one that indicates I've been exposed to it, is positive. The active one is mostly negative. This may not mean anything. However, she asked me she doesn't know how I would have been exposed to it. So that's a concern. Also, it could mean that I did have the virus recently, and when they drew the lab work last week, it wasn't actively present, or showing up on my lab results. So this could have been the cause of the virus and all of my symptoms. Or it may be nothing? My coordinator is confirming this with one of the transplant doctors, and will let me know.

I knew something was up by looking at her face while checking the results. Usually...if it's a done deal and very evident, any coordinator will jump out and tell you it's negative. I watched her looking at the computer, and she looked at it for too long of a period, and kept saying "hang on." I return in the morning to have more lab work done, and will call my coordinator tomorrow to find out the results from that. At that time, hopefully she has an answer to the Parvo situation. The Parvo virus can attack your immune system, and cause a low WBC count. It also has characteristics of making you anemic and decreasing your magnesium level, both of which has been going on. So it would make perfect sense, but I don't want to jump to any conclusion!

My clinical went well today. Although, I set my alarm for 7:00 am, thinking that's when I needed to get up. Well...oops! That was when I was supposed to leave. And I've been doing this clinical since June. I guess I just wasn't thinking. I stayed at my clinical until 12:30. Then I had lunch with Brandi, a CF patient. Then I walked a couple of blocks to the Children's Hospital for my study visit. Then I walked back to UAB to visit with Brandi a few more minutes. Then I went and saw another CF patient. And then finally, I went to pick up my excuse. I left UAB around 3:45 (by the time I got out of the parking deck) in route to my next appointment, physical therapy for my back. I got home around 7:00, ate dinner, and are now about to study for a midterm I have tomorrow. BUSY BUSY DAY!!!!

I will update tomorrow! Pray for answers!!

Going Home

So I am escaping from the hospital this afternoon. My antibiotics were discontinued last night. The doctor I saw this morning (who was the same as yesterday) thinks I have something viral and it is just going to have to run its course.

My WBC count is lower today than yesterday. He still thinks it is drug related, but wants me to be set up with hematology just to make sure. And he wants me to return to clinic in a few weeks.

I still have a few tests awaiting results, and he said my coordinator will call me with those results.

I'm really tired, have a headache, and are breathing a little harder today. It will be good to be back home. I have decided to take off work tomorrow, and return on Tuesday.

I'm also behind in school work, so have a lot of catching up to do. Thank you for all of your comments, and prayers! I really appreciate them.

Saturday Update #2

Well, I just saw the transplant doctor who is on service for the weekend. I hate the fact that there will be one doctor on service for the week, and a different one on service for the weekend. Almost always, each doctor has their own opinion. While I like each one of the doctors on our transplant team, it gets very frustrating when each one tells you something different.

The doctor I just saw doesn't really think I have anything. He thinks the low WBC count is due to one of my immunosuppresent drugs, Imuran. Evidently, it is known to suppress the bone marrow in the body, especially when you have some sort of a virus. So he basically, doesn't have any other explanation, and really doesn't think there is one.

On the respiratory side of things, he really doesn't think anything is going on either. He thinks it's probably just a virus, and thinks the iv antibiotics are useless, and not necessary to continue. (that really pissed me off). The doctor that admitted me did so for a reason, I didn't ask to be admitted. And my symptoms were all respiratory related, including cough, wheezing, shortness of breath, fatigue, etc. And the initial plan was to do home iv antibiotics anyway since I had already been on the oral abx that would work. So now, to just have 4.5 days of iv abx...kind of ticks me off. Who do you believe??

Then he asks me or rather states, "You aren't having any sinus issues are you?" And I replied with a "yes, I've been having sinus issues, and think this is all where it started from. We've been trying to knock out the pseudomonus my ENT cultured about 1month ago." Then he asks me why isn't it documented? Well, I don't know. But I sure did tell the doctor and CRNP that admitted me. But then again, he thinks the iv abx will be pointless, and thinks that I should be discharged tomorrow. I don't have a problem with being discharged, but I do have a problem with not continuing the iv abx. Rather, I'm really really frustrated with his plan. I guarantee you if the other doctor from this week was on right now, he would probably keep me a few more days and let me continue the abx at least at home. It's almost like you have to convince some of the doctors you are sick, because they just don't believe you. Why and how could I fake wheezing, coughing, shortness of breath, fatigue, etc. And why would I want to do that? I have a job and are in school full time. I want to miss the least amount of days possible. I didn't ask to come in the hospital, but thought I needed it and it was for a good reason.

So, now I really don't know what to think. I'm kind of in a foul mood right now. One of two things are going to happen: Whatever this is, ends up being just a virus, and it runs its course, and everything is ok. My WBC count will come back up. Or, 2)this is some sort of respiratory infection, it doesn't get knocked out since he is stopping the abx, and it later turns into actual pneumonia. And if that happens, you know good and well, who I will blame for that.

Sorry for my ranting...I'm just really ticked off right now.

Hospital Day 4

Today has been a crazy day. The doctors are continuing to run multiple tests to figure out why my WBC count has been extremely low. I'm still being treated for broncho-pneumonia. The diagnosis of Mono still stands. So...I have broncho-pneumonia and Mono. What a combination!!!

I have felt a little better today, and are mostly contributing it to the antibiotics. My hematocrit is also really low for some reason, so I am about to receive a unit of blood. I usually run around 30, and today it was 24, so that's kind of a big drop. Hopefully this will also give me more energy.

I have not been able to sleep at all during the day today due to multiple things going on. It seems like they keep coming up with different things to test me for. And the Infectious Disease people aren't completely sold on the Mono. They think something else is suppressing my bone marrow (immune system). So they have requested that a few other tests be done (all of these are lab tests, for the most part).

There is no talk of when I might be able to go home. I know some of these tests take 3-5 days for the results to come back. So I will probably be here until we get those results. It could be Monday, or next Friday. I really have no earthly idea. We have a different doctor on call for the weekend, and the one that was on call this week, will be back on next week.

Christie and I have been able to have some good talks. Our rooms are right next to each other. I also have 2 CF friends that are in as well. Although I can't leave my unit, one of them came to visit me on Thursday, and I text the other one throughout the day. For CF patients, once you have a transplant, you are seen solely by the transplant team. You have no more contact with the CF team, and if you have to come in the hospital, you come in on our HTICU (Heart and Lung Transplant ICU).

I kind of held off on visitors today due to the Mono diagnosis. But I think it will be ok for visitors to come as long as they aren't sick, and if it's a CF patient, they wear a mask. Not just because of the Mono, but also because I basically have a non-existent immune system.

I'm going to try and lay down and maybe get some rest. It's so hard to sleep in the hospital, hence the sleeping during the day. And I haven't been able to sleep all day, so I am really anxious to get some rest for the night.

As always, thank you for your continued prayers. Please pray that if anything else is going on besides the two current things, it will show up quickly and that it can be treated. Usually with viruses, they have to run it's course, and the only thing you can do is treat the symptoms.

Update!

So I just saw the team of doctors from Infectious Disease. Apparently, the mono test was "weakly" positive. So even though I have mono, they are still looking into other possibilities of why my WBC count is low. They are going to evaluate my white blood cells, bone marrow, etc., and suggest a few more tests to my doctor.

UGH!..this is so frustrating. I was sort of relieved when they told me I had mono, just because I had an answer. But now..them not being so sure and thinking something else is going on. I don't know what to think??

The main doctor from infectious disease thought I was tired because I am anemic. Well, I'm always anemic. Transplant patients stay that way a lot of the time. So what he may think is anemic, may be normal to me and my transplant team. I'm going to ask my nurse what my hematocrit was today.

I'll keep you updated! I'm trying to get some rest, but it just isn't happening.

Mono

So we have finally figured out what I have and what has caused the dramatic decrease in my WBC count! Evidently, I have Mono. I'm kind of shocked. The test for it just came back and it was positive. My doctor said I would feel like "xxxx" for about another week. I have a feeling that they will keep me in here another week, since I am a transplant patient.

This explains the fatigue, shortness of breath, nausea, etc. These symptoms have been lingering for several months, but every time I go to clinic or have lab work done, nothing shows up. So the drop in my WBC count was a clue to start testing for viruses. Although I'm a little concernd, I'm glad I have an answer as to why I've been feeling bad.

I'm going to google "mono" today and do a little research on it.

Hospital Day 3

I don't have much new information today. I feel pretty much the same, maybe a tad bit better this evening. I've been sleeping on and off throughout the day. My flu virus test did come back negative. I am still waiting on results from another virus test as well as a test for mono. My doctor still thinks I have pneumonia, but something else going on on top of that. He is going to consult the Infections Disease doctors tomorrow to see if they have any explanation of why my WBC count is so low. It is pretty much the same today, actually slightly lower. That is what is really concerning my doctor right now.

My magnesium was low again today (1.3). I was sort of surprised since I got IV mag last Friday. Obviously, it didn't bring my level up. Or if it did, it dropped again dramatically. So I had to get more IV magnesium this afternoon.

I also got some continuous fluids throughout the night last night to help hydrate me some. I managed to go through the majority of the day without any phinigrin, which is good.

I did develop more of a cough today, but it may be due to the albuterol aerosols helping the junk move around.

So, I guess we will see what tomorrow brings. Still no word on when I can get out of this place. I think they want to figure out what is causing my WBC count to be low before sending me home. I'm still pretty fatigued and weak anyways.
I'm about to try and get some sleep. I'll post again tomorrow.

Hospital Day 2

Day 2 is slowly coming to an end, thank goodness. I've been sleeping on and off during the day. I didn't get much sleep last night. I've also been really nauseated so I am getting phinigren about every 6 hours. That makes me a tad sleepy as well.

The team is still trying to figure out what exactly is going on. Right now they are treating me for pneumonia. There is also a very good chance I have something viral. My WBC count is 1.7, which is the lowest it's ever been. That's not good for me since i basically have no immune system. I've been tested for the flu as well as CMV. The CMV (virus) did come back negative.

I'm still really short of breath, even at rest, and are still battling other symptoms. Hopefully everything will be better tomorrow!

Thanks again for your continued prayers. Have a good night!