Day 110

[squirrellypoo]

Hi Laura.

Yeah that seems kinda worrying to me, too... I hope someone else can shed some light on this for you.

melissa

[Laura]

Yesterday I woke up sick and with a fever. They found I have an infection in my lungs. Caught it early thank God. Although, I can't help but worry especially after Vera. I pray that it doesn't become serious.

Laura

[squirrellypoo]

Oh geez how scary! You were right to run to the doctors, they've drummed it into my thick head now to go in at the slightest temperature.

Fingers crossed the meds will take care of this asap. I'll be thinking of you!

[Laura]

Thanks Melissa! I'll keep you updated.

Laura

[tserdogan]

Hi Laura.

May you recover soon.Is your blood counts affected negatively about this fever and infectios.Did you check it

[Laura]

They were checked but I didn't get the results. Thanks!

[Laura]

My counts have been holding great. Just those darn platelets that won't budge from the 90,000 range, oh well. I have another spot in my right lung and they aren't quite sure what is going on. But I feel so much better so they are thinking maybe it is residual inflammation?? I am itching to go back to work. Once I had the taste of work, it is crazy to be off once again and sitting around. I have been off two weeks now. I hope to return Thursday or so?

Laura

[evansmom]

Hi Laura,

Glad to read you are feeling much better. Are your asthma type symptoms improved as well? I am sure the docs are keeping an eye on the spot in your right lung through repeat chest xrays etc. but is there a point when they may do a bronch and get a closer look?

[Laura]

Hi Nicole,

I actually don't have a repeat xray for two weeks (at my next appointment) because the doctor feels since I feel fine and am no longer having fevers it must be fine. I guess I am not too crazy with that response at all and I actually had to request the repeat xray at my follow up. I do see the pulmonologist tomorrow in regards to the possible asthma flareup or whatever it was that was going on. The ER had put me on five days of 50 mg of Prednisone to help with it. I was worried because of the spots in the lungs but my transplant doctor was fine with this. I made them check with him first. So I am not really sure what is going on? At least I feel well, right? But then again my doctor seems to think that I was okay in the first place (in regards to the asthma stuff) and it was just esophageal spams I was having. I also don't agree with this as why would my chest feel tight and I had coughing fits and couldn't breath? And by using the albuterol 30-40 times a day helped. Honestly, it has been a back and forth thing the past week and I am just really frustrated with things right now. I felt like my concerns weren't being addressed and were being brushed off so I just went to the ER and that is who suggested an asthma flare up. The symptoms I was feeling have been completely gone since I have been on the Prednisone too. I guess I will just see what the pulmonologist says tomorrow. Anyhow, so I am not sure if the infection, lung spots are related to the possible asthma flare-up or they are two completely different things?

Laura

[Laura]

Nicole,

I should probably clarify things a little bit...

I originally had woken up sick with a fever, etc. They ran all their tests they normally do for fever and found a nodule on the 4th rib and some opacity. So I was put on an antibiotic. Still felt sick for days after. Headaches, nausea, general feeling of not feeling well, fever. Then I started having those chest tightness, coughing spells, shortness of breath. At first it was once to twice a day. Then I had a follow up appointment and xray. It showed the nodule was still there but I had another one inbetween the 6-7 rib too. I told the doctor about the symptoms I was having but I felt like it was brushed off. I felt daily it was progressively getting worse and worse. I also felt like drinking cold things or going outside and even taking the Flovent really triggered an episode. I kept calling and I felt like they were brushing things off. Seriously, it was the worst feeling I have felt through my entire transplant. I was sick of them brushing it off so one morning when I woke up and had one of those spells I said forget it and just went to the ER. That is who thought maybe it was an asthma flare up or what not that was triggered from the illness or allergies that I was feeling. And plus the fact that if I took tons of albuterol the feeling went away. So they put me on the Prednisone and I have not had issues with those spells since. So we will see what the pulmonologist says tomorrow. I don't feel like I could fully express what was happening on my page since I feel like I am downing Mayo and since I work there too...I even feel bad expressing my frustrations about what has happened on here but I guess I am just stating the facts too.

Laura

[evansmom]

Hi Laura,

Geez, how frustrating. I can appreciate your position in terms of being critical with your treatment centre/employer however, you are stating the facts, you are not naming names and you are entitled to seek emotional support from your friends here and vent your frustrations.

I cannot lie, I am a bit concerned about your pulmonary issues and the fact that you responded so quickly and favourably to the high dose pred.

Your immune system is still very young and you are still somewhat suppressed on the gut GVH med ?budoneside. The two things I would be on alert for are:

1. Fungus in the lung
2. Bronchiolitis Obliterans (relatively rare post BMT complication of a gvh nature, Mark Yates had this) which can become even more symptomatic +/- serious if a pneumonia develops over this, which is then called bronchiolitis obliterans organizing pneumonia (BOOP).

Each condition has a very specific treatment.

I sure as hell don't mean to alarm you but knowledge is power. No one on your medical team is losing any sleep over your situation, you know what I mean?

At the end of the day, you are not seeking a gratifying friendship with these folks. It doesn't matter if they think you're annoying or a pain in their ass. They would be no less concerned than you are if this was them or their loved one. If something doesn't make sense or your gut tells you they are on the wrong track, say so. Push hard for what you need, you ARE worth it!

I don't buy this sudden asthma diagnosis either.

Take care and please keep us posted.

[Laura]

Nicole,

It is very interesting what you wrote because it was pretty much exactly how the pulmonologist felt too. I know I have been a pain in the ass to the nurses the past week but you are right, I need to push for things that I don't feel is right and I am not there to be their friend.

Anyhow, so I meet with the pulmonologist and he was AMAZING!! I loved him; he was great. He expressed great concern over the symptoms I have been having and basically flat out stated "it is not in your head". DUH, that is exactly what I have been saying to my main doctor but no one was listening to me. He ran a chest CT and another set of pulmonary function tests. Every pulmonary function test I have had has come back lower (and again today, lower). This concerns him greatly. The chest CT also showed the nodules and infiltrates in the right lung, which was also concerning. According to the CT report it could be an infection but the doctors don't seem to feel this is the case because I am "well". He basically stated he thinks I could have bronchiolitis olbliterans. He said it is hard to officially diagnosis this but states that it very well could be this and I need to be followed very closely. I am going to have follow up chest CT and PFT in a month and go from there, unless of course things become worse. He also increased my Flovent to 4 puffs twice a day. He is also going to have me take azithromycin M/W/F. I guess research has shown that this keeps the lungs healthy and happy. Interesting, huh? I have to admit that I am nervous about all of this especially since I do know what happened to Mark and the fact that I feel like my BMT dr is brushing this off. I wish I had an official stamp of a diagnosis too but I will take what I can get. It is not that I want to take Prednisone but I worry that the treatment they are doing isn't enough?? I need to do some research on this. He told me that any damage that is done is not reversible, so why wait for the damage to be done? Then again, what if it is an infection and they are not treating that? However, I do honestly feel good, but do I just feel good because of the Prednisone? Yesterday was my last day taking that. So he didn't officially make a diagnosis but stated it could be B.O. and just needs to be followed carefully incase that is what it is. AHH frustrating. Anyhow, I am going to go back to work tomorrow because I feel good and I don't feel like there is a reason not to go unless you have different thoughts???
I greatly appreciate any advice/ideas/etc you have
Laura

[evansmom]

Laura,

Great, great news on the pulmonologists' attitude and approach. Azithromycin and prednisone (I guess Flovent instead?) are the appropriate therapy, bang on.

If it is BO, it's critical that they get a jump on it now. It's also real important for you to become very well versed on this condition. Know it inside and out. If it ends up not being BO, then hey, no harm done. But if it is, YOU can be the expert and help determine the course of action. Very empowering.

I know a 16 year old boy who, 2 years ago, developed BO post BMT for relapsed leukemia after a life threatening and prolonged bout with severe GVH (grade 4 skin and eyes, grade 3 gut). The BO emerged 2 years after he became stable with the GVH. His lung function was really low, like 25%. He had to be hospitalized for a few weeks at the peak of this condition for azith and solucortef IV but I want you to know he is GREAT today. In grade 10 and getting good grades, loving life. And this is a boy who was supposed to die in the ICU several times over.

Go back to work, it's keeping you busy and fulfilled. It's important to keep active, eat really well and drink lots of water. Nuture your immune system by doing all that you can to keep it healthy, including plenty of rest. Just be aware of the dangers in your department and take appropriate measures to protect yourself from the kiddies that are potentially contagious. Remember, kids are cesspools at the best of times!

Your health comes first. I believe your instincts will tell you if/when it's time to back off from working and focus on your health.

You are a tough and smart girl, you'll be alright.

[Laura]

Nicole,
Yes, I will definitely have to take the time to research and get to know what is going on with this. It will be interesting to see what my BMT dr feels about this possible diagnosis since he seems to think they are "esophageal spasms" or at least the last I talked to him that is what he thought. At least the pulmonologist seems to think there is something to what I am saying. Thanks again for all your advice, I always feel better after hearing what you have to say.

Laura

[evansmom]

http://erj.ersjournals.com/cgi/reprint/25/3/490.pdf

[Laura]

Thanks!

[squirrellypoo]

Hi Laura.

Oh that sounds like such a good result with the pulmonologist! Funny that he says Azithromycin is to keep your lungs happy - I wonder if that's why my team have said I'll be on it for life? I'm relieved to hear that they're not suggesting you get a lung biopsy - I don't want to scare you, but mine was HARDCORE. General anaesthetic, two solid weeks of being totally reliant on super strong painkillers, and it resulted in 3 rather large scars and the permanent loss of sensation in my right breast (apparently they hit a nerve while in there, thanks guys!). And they went in to diagnose what they thought was a fungal infection only to get no result whatsoever. So don't be bullied into having one just on the off-chance it might reveal something - if they do it, make sure it's for a really really good reason.

I'm off to reply to your PM now...

[Laura]

Melissa, Thanks for the info. On a side note. I always wondered what the RIC stands for in your signature? Thanks See pM

Laura

[squirrellypoo]

Ahh it's Reduced Intensity Conditioning, aka a mini-transplant.

[Jen B]

Laura,
Almost a year after transplant and still having to worry about this.
Makes me wonder at which year after BMT we get to shelve the worrying and continue on with normalcy.
Please keep us posted!

[Laura]

I had my appointment today. All my labs are about the same (normal except PTLS at 93). I don't go back until my 1 yr post transplant follow up. It is unbelievable to me that I had the transplant one year ago. I just can't get over that. I am feeling great and doing good. Just still having issues with Potassium. I had to go up to 140 meq daily today (14 pills daily). I meet with the lung doctor in a few weeks to recheck everything too.
Laura

[squirrellypoo]

14 pills a day?? omg! I'm only taking... (counts) 6 each day. Though 3 of those are Aciclovir so it's only 4 different ones.

Yeah the time has just flown by. I was saying to the life coach yesterday (my last session, waaaah!) that the time up to Day 100 just crawled by, and then as soon as you hit that, the time just flies...

Wedding planning is going very well! I'm in the middle of sewing the two bridesmaids dresses right now but I hope to finish those by the end of May. I've got to organise a tasting session with the caterers and finish the wedding website so we can finally send out the invites, but it's all good. I'm such a chilled-out opposite of a bridezilla it's very funny. I think after a BMT you just can't get too caught up on little things going wrong in life any more. (Though, to be fair, we were both pretty low-key about the wedding before I got sick, too!)

[Laura]

Ha! Well I take more than 14 pills a day. For just the Potassium that is 14 pills. Then 3 pills of Budesonide, 2 of Acyclovir, 2 of Lyrica, 2 of Protonix, 1 of Azyithromycin, 1 of multivitamin. So that equals 25 pills a day. Yeah, needless to say I am sick of the Potassium pills.

So happy to hear the wedding plans are moving along. I bet it is exciting to finally be able to move on to normal things and get back to your life.

What tests are you doing for your 1 yr follow up? Just curious. Also, after a year post transplant what precautions are they still going to have you take?

I am just finishing working a night shift (11p-730a) so I can't wait to go home and crawl in bed!
Laura

[squirrellypoo]

Oh I don't know the details of my one year tests yet - remember I'm a month behind you so my anniversary is in the first week of July. All I know is that I have to get a BMB *grumble grumble* at least it's the last one!! I'm definitely scheduling that for AFTER my race, as I always feel pain in my hip with every step after one, and a 10k would be excruciating right after a BMB...

I think I'm getting a few immunisations and they're going to evaluate whether to keep me on the Aciclovir past then, but other than that, I don't really know.

I'm just planning on celebrating with some rebirthday cake and my race.

[Laura]

Yeah, I am throwing a mini party at my place to celebrate my one year. I have to work the weekend of my one year so I am throwing it the weekend before. I also am having a BMB/BMA but under sedation, bone density, pulmonary function tests (early), chest xray (early), have to have a dentist check my teeth (in July), different labs. I thought I was supposed to get shots too but no mention of that?? So I am not sure??

I might have to be scoped in the next week or so to check for GVHD in my esophagus, stomach, and to see if it is worse in my gut. I have been having some issues. The diarrhea has returned since Friday. For awhile now my stomach and esophagus have been bugging me with possible heartburn like symptoms and just plain upset. I already take 40 mg of Protonix twice a day so we are going to also add Pepcid 20 mg twice a day to see if that helps. If not, it's a scope. UGHH just when I am starting back to work.

Laura