long term follow up
 

Long time no post :) My counts remain normal minus my platelets 130-140 range. However, I still am having huge issues with my gut...diarrhea, nausea, abd pain. I am getting nowhere here. Is it from the transplant? Who knows? I am going to the Cleveland Clinic in June for a second opinion in their GI department. I am not sure how long I will be there. As first we need to figure out if it is really a transplant issue or not. The other big thing is I have this severe chronic fatigue. I am also getting no acknowledgment from my facility in regards to this. So I figured I should also be seen there for it. But again is it transplant related???? I guess I am asking for opinions. Should I try and see an AA specialist there? BMT specialist? I am seeing a GI specialist already. But do I see for the fatigue stuff??

Sherri any thoughts??

Laura

Hi Laura. Thanks for sharing where you are at. Sounds like a very frustrating time for you. Not sure I know enough to be able to answer some of your questions but, hang in there. We're with you in it. Hope a different perspective from another Doctor may just give you the answer you need. Take care. xo Julie

Laura,

Gut problems after a matched unrelated donor transplant sure sound like graft-versus-host disease to me, so a transplant specialist or GVH specialist would seem like the appropriate first stop. A GI specialist who is not familiar with transplants will not know what to do.

The fatigue may also be transplant related, so again I'd talk to a transplant specialist.

Cleveland Clinic is an excellent choice.

Hi Laura.

Oh I'm so glad you posted, even though it's not happy news. I think for those of us who are beyond the initial transplant stages, it's easy to forget that people still want to hear updates, even when we no longer have the big day milestone events anymore.

Did your fatigue coincide with all your gut issues (though I suppose if both existed for the full post-transplant time, it's hard to say)? I'm just wondering if perhaps your gut issues are the cause of your fatigue, because if your body is constantly fighting something in your gut, then it seems to follow that you're going to be very tired because of it.

How has your work been through all this? I know you work a very physically intensive job so I'm hoping for your sake that they've been able to adjust your shifts to help accommodate this.

And since we've been hairstyle buddies for the past 20ish months, have you been able to have your first barely-there ponytail yet? I put my hair up for the first time last week, though half of it did fall out right away! :)

melissa

Thanks for your sweet note.
Laura

Here is the kicker with that statement. Original biopsies showed both GVHD and CMV. Recent biopsies show neither. However, I am still on Budesonide so would this mask that? My transplant dr says it has NOTHING to do with transplant. GI wonders if the radiation damaged the nerve receptors? Or if it is GVHD masked by Budesonide? That is why it is so hard to decide what to do.

If I should truly seek out the advice of another BMT center. Than I want to go to the absolute best.

I originally choose Cleveland Clinic because they are the second best for GI. Surprisingly Mayo is first........

Laura

Good thoughts on the fatigue...while I don't doubt it contributes to the fatigue I honestly feel like the fatigue is a completely different issue on its own. I feel like something else isn't right. I have this bad, progressive fatigue that is severe. I am always exhausted/fatigued 24 hours a day. I never feel refreshed. I have never felt like this post transplant like I do now.

My nurse manager is not helping matters. However, my fatigue is so severe I just can't work.

Yes, I can pull it up but the top falls right out too :)

How are you?

Laura

Laura,

You've been on my mind a lot lately. Good to hear from you although the news is not so good. I was thinking the same thing as Melissa about the fatigue related to your body's constant fight. I think (in my completely unprofessional opinion) in your position, that everything going on is likely to be transplant related. I can't remember who told me this but when I was looking at different transplant centers, one of the reasons Hutchinson in Seattle was so highly recommended is that they have a lot of specialists with dual specialities, transplant + GI, for example, or transplant plus gyn or transplant plus dentistry. Since I decided to stay close to home at Hopkins, I never found out if this is correct info but it would be worth a call to them. They're very good about phone consults to determine if it's worth your whike to make the journey. Please keep us posted. Sending healing thoughts your way.

Hugs, Karen

Hi Laura,

Sorry to hear you are still struggling. I can only imagine how frustrating it must be. I really hope Cleveland can shed some light on all this.

With all the continuing GI symptoms, it is almost certain that you are not absorbing all the nutrients you should be. Could a lack of something, a vitamin say, be the cause of your severe fatigue? I'm thinking you've probably had your nutritional status checked and re-checked by now but maybe you're lacking something no one thought of checking yet. When I think of severe fatigue, malnutrition is the first thing that comes to mind.

Do you feel that the Cleveland Clinic is an appropriate place to go? I really honestly will go anywhere. I just thought with having the top GI place would be helpful.

Actually I have begged and begged and begged them to check nutritional studies. They have absolutely refused stating there would be nothing wrong with them. Ha, I know. They finally just drew some levels. My B12 was SEVERELY low. So I got three B12 shots (a week apart) but it has since not been rechecked because "that will take care of it and it will be fine". My vitamin D was also low. So taking a month prescription than a recheck. Otherwise they were all normal. But they only checked a few. Any insights into what you think would be beneficial to check would be greatly appreciated. I think if I can go to them and say xyz needs to be checked they would be more willing....

I got reaffirmed of my decision to go elsewhere after my appointment with GI today. I was basically told that I need to stop calling when my gut flares, when I am dehydrated, think my potassium is low, etc. There is nothing they can do and I just need to take antidiarrheals and drink gatorade. That they are referring me to my primary care provider to handle my gut from now on. And "they can always page me (GI) if need be". So my transplant doctor does not want to handle my GI or fatigue issues. And now GI does not want to handle my GI or fatigue issues. Do you hear my screams of frustration!

I would head to a second facility now. But it is more convenient to wait until Ryan is done with school for the year (June 6). So June 6 we are loading up and driving to Ohio unless it seems a different facility would be better.

I did tell them I want to stop all medications and see what happens with my gut. I am stopping the Budesonide, which will allow me to stop the acyclovir. Waiting confirmation to stop the Zithromax so than I can stop the Vancomycin.

And my Mayo providers wonder why I am so frustrated and irritated!

Laura

Thanks for the information Karen. How are you doing?

Laura

OH MY Laura.....So sorry about the GI issues. Unfortunately, nutrition is what mainstream medicine is the worst at. There is no way that 3 shots of B12 resolved your B12 issue. You liver stores up to 5 years of B12 and it will take quite a bit of B12 to correct the B12 and replenish that store. At this point, IMO, I would assume that your overall nutritional status is low and checking for individual nutrients will only confirm what you already suspect.

It makes perfect sense that your GI issues are causing the fatigue and nutritional issues. But it must be difficult to take any supplements at this point. There are alternative, nutritionally focused docs that may be able to help identify and correct those insufficiencies while you work on figuring out the GI issues.

You may be able to get some nutritional testing done on your own if you're up to the challenge. Some labs will run your blood and urine and provide you with some pretty decent data. I can go back and look at some that John did if you are interested.

Hi Laura,
i am happy to hear you again.
Can fatigue be related to iron overload.especially heart and liver are the first target for iron.
Serkan,

(((Laura))), I hear your frustration and admire your courage to keep seeking this out. There seems to be a lot of "I don't knows" with these diseases. It's not easy. Keep us posted, my friend. xo Julie

Hi Laura,

You might find this website about chronic fatigue syndrome helpful; the bloggers most recent post describes how weekly vitamin B12 injections have helped him. The more I think about it, the more I feel that your issues are caused by severe nutritional (vitamin?) deficits caused by malabsorption from your gut issues.

http://www.chronicfatiguesynd.com/

I find it so disheartening when I hear stories like yours where doctors just give up, or even disacknowledge, when they can't find the problems. Bad medicine, I think.

I think the Cleveland Clinic is a great idea, and I truly hope they will uncover something and be able to fix you.

Take care,

Nicole

Just to add to Nicole's latest post, Vitamin C and B5 are critical for adrenal health. Poor functioning adrenal glands will impact energy. We found John deficient in both.

Oral B12 at 5000mcg of the methly form is very effective at replenishing B12. So if they don't want to give you B12 shot, you can take of this yourself. You would also need to supplement all the other B vitamins. They need each other to work.

Have you had your thyroid checked. The thyroid and adrenal are linked. A few year back they modified the reference range of TSH and many docs still don't realize it.

Yes, I would be greatly appreciative and interested in any information you can pass on.

Laura

If I remember correctly my levels were 500-600 range so I should be okay on this.

Thanks though. Laura

Thanks for the information and the website. The sad thing is that I fit the description of CFS pretty exact. However, I can't get anyone to acknowledge how bad I feel. I will read more into the information on the site.

Laura

I see my primary on Wednesday. I think if I asked to her to check xyz she would. She is so nice and tells me she remembers me before transplant and sees me now and can tell I have a very poor quality of life. She tells me she will do whatever needs to be done in order for me to get my life back. I will ask for B 12, B 5, C, to be checked but any others? Is that dose of oral B12 per day or? I am just nervous because there are so many things out there I don't want to accidently take the wrong thing, if that makes sense. But at this point I will try pretty much anything because I feel so horrible. I got my primary to check my thyroid because transplant refused to. It was "normal". I will have to get the number.

Laura

Oh Laura I am SO glad you have someone to be an advocate for you, because I was stunned to hear that the other doctors wouldn't even investigate your nutritionals before. Seriously, stunned. I can't count the number of times I've had things tested just because there *might* be a chance it might be off, so to hear that you're begging stuff to be checked is just so sad and frustrating.

I really hope that Cleveland can sort out these issues for you. I made the switch to a gynae department at another hospital (actually closer to home!) and the difference has been night and day - I feel this new dept actually cares and is sympathetic towards my problems, and even no there's been no improvement yet, at least they're trying things and I feel like we're moving towards a resolution. And sometimes that's half the battle.

I hope soon you'll be out there running with me...

melissa

Nutritional testing
 

Hi Laura,

Here's some info on what we did with John. I will scan copies of some the results and email them to you so you can get an idea of what type of info you'll receive. Please know that they are very personal and destroy them appropriately when you are finished with them.

I will post another message later with more info on B12 and the other supplements John takes for "energy". Until then, this should keep you busy.


Organic Acid urine test; copper/zinc profile (got valuable info on Vit C, B5 and glutithione)
http://www.greatplainslaboratory.com/home/eng/home.asp


Stool Test: This is an important area to look at and fix. GI health effects so many aspects of overall health. Unfortunately, we found this somewhat confusing in that we did not like the doc we were working with at the time and stool tests check for anti-bodies to things like parasites. If positive, it doesn’t mean you have it now. Just means you have antibodies against them and that at some point, you may have had them. I wonder how many antibodies John has from others due to all the transfusions especially since they transfused white cell (very rare thing to do) when he was in the hospital. I think we still need to focus on this but have slacked off. Based on the results, he may benefit from a gluten free diet since the test indicated potential sub-clinical intolerances. He does use probiotics daily and eats lacto-fermented cabbage and pickles to help keep the bad bacteria in check. We should probably re-test now that he’s off Exjade. That drug really messed with his GI track.
http://www.diagnostechs.com/TestPane...rOverview.aspx

Red Blood Cell Elements (test result were good on this)
http://www.doctorsdata.com/tests_assessments_info.asp


Here’s another Lab that to look at for nutritional assessment. We have not used them but this may be something to start with.
http://www.gdx.net/product/10051


We use them to monitor John’s testosterone. Since he’s on a bio-identicle transdermal cream, saliva is a better indicator of testosterone status. They also do Vitamin D testing. You can order these yourself.
http://www.zrtlab.com/


Many insurance plans may cover part of the testing. They don’t cover any of the saliva testing. So you may have a higher out-of-pocket expense. Since you GP is open to helping you sort through this, my guess is that she will have no problem ordering some of these for you. They are pretty simple....blood, urine and stool....and can give you some good insight as to how to approach your overall health. I know it’s complicated because of the transplant and most docs don’t know how to integrate nutrition as a tool to improve health.

IMO, my priority would be to do the stool analysis and nutritional test first. I found that when they wanted to look at everything at once, it got overwhelming. I feel that if you start with the fundamentals and fix those first, then other things will self correct.