A long past few months

[Laura]

I don't even know where to start with this post or even where to begin to fill people in. So much has occurred and yet so much hasn't been figured out and it is frustrating.

My counts remain good minus my platelets in the low 50's. Being help up by Prednisone? Who knows? Low from Sirolimus? Who knows? I think both.

My skin remains a complete mess and my mouth. Although it has been improving, my quality of life is practically nonexistant.

The past two months, I have been forced to live in complete darkness. No lights, no UV, no sun, only leaving the house for major apts in order to barely survive the sensitivity to UV. Over the past few weeks I have noticed an improvement; however, how long must I live like this? I am to the point of that's try whatever drugs are out there and just get this under control so I can have my life...a life...back.

While my mouth is better, my mouth is also awful with GVHD. It is so sensitive and is a constant guessing game at what can cause it to flare.

But the biggest thing that really has been causing me misery and I feel is getting worse is this God awful heat intolerance I have. I feel if this could get under control my quality of life would be so much better. There should be no reason why I can't walk around the house for 10 or so minutes without become so overheated and swelling up that I physically have to help my body cool off. We barely use our heat and it is now winter. I can't stand any heat...heat from cooking...body heat...etc...

My gut remains one hundred percent normal since being on
Prednisone and Sirolimus

Currently I am on 40 mg of Prednisone daily, 5 mg Sirolimus daily, Oral Decadron swish and spit, Oral Prograf swish and spit, Salagen prn, oxy for mouth pain, etc....

I welcome any advice.
Laura

[mausmish]

Laura,

You've been on my mind so much, and I'm so very sorry about all you're having to endure. I wish I had advice to offer, anything at all, but I don't. Truthfully, realizing I might so easily be in the same position terrifies me. You've been incredibly tough, brave, and patient; hopefully all of this will pay off soon. I admire your strength and mourn your miseries. Hopefully, you'll be rewarded with big improvements soon. In the meantime, I'm sending many healing thoughts your way. Don't ever feel the need to reply to my posts or emails. Use all of your energy to focus on getting well again!

Hugs,
Karen

[Lisa V]

Laura, I echo everything Karen has said. I follow all of your updates hoping to hear that life is getting better for you, only to hear of some new torture. I just wish I could do or say anything to help.

I always wonder if you knew what you know now, would you have made the same decisions, but of course that's not a fair question. You tried so many things before going the BMT route, and that was your only remaining option, so of course you had to take it! We all need to hear both the good and the bad to get a full picture, so your experience has been helpful in that respect. I just hope you find a doctor who can figure it all out and supply the magic bullet to make it better and give you your life back!

[squirrellypoo]

Thanks for the update, Laura. I've checked in on your caringbridge page a couple times in the past weeks when I've been thinking about you.

I'm so sorry to hear things have only partially improved, and not enough to give you the quality of life you deserve. Who would've thought that the transplant would move you from one aspect of vampire territory (need for blood) into another (aversion to sunlight)? I'm glad to hear your gut is responding to the steroids, though it sounds like a lot of other baggage has come with it. At least you've got doctors at Boston that are willing to try different things, which always feels like progress to me. Hopefully you'll find some real improvements soon.

[tserdogan]

I read your updates from caringbridge pages.
My opinion heat may be about the long term side efffects of prednisone.Thin skin and nerve damages are typical side effects of high dose prednisone.i hope when your prednisone dosage decrease to minimum levels,you will feel yourself good.

[Marlene]

I don't know what to say Laura. I cannot even begin to imagine all that you are dealing with these days.

With all the meds you are on, it makes it difficult to sort out things. Is there a possibility that the heat related problems are a disruption in your endocrine system.... Estrogen, progesterone and thyroid? All can cause huge temp swings for the slightest movement or minor increase in room temp.

[evansmom]

Hey Laura,

I too am at a loss for words. Of all the BMT journeys we have read, I just can't recall hearing someone speak of such diverse life changing symptoms. To be, in essence, severely allergic to light is hard to comprehend. And the heat intolerance, well, I just cannot imagine.

If their should be quality of life awards handed out for extreme patience and tenacity and perserverence, you would be enjoying the best possible life right now - you deserve it.

Something's got to go your way at some point. Maybe just like we know GVH can just 'burn out', so too could this, with any luck?

Just like Marlene suggested, are your estrogen and progesterone levels ok given the extreme heat intolerance?

[Laura]

Originally Posted by mausmish

Laura,

You've been on my mind so much, and I'm so very sorry about all you're having to endure. I wish I had advice to offer, anything at all, but I don't. Truthfully, realizing I might so easily be in the same position terrifies me. You've been incredibly tough, brave, and patient; hopefully all of this will pay off soon. I admire your strength and mourn your miseries. Hopefully, you'll be rewarded with big improvements soon. In the meantime, I'm sending many healing thoughts your way. Don't ever feel the need to reply to my posts or emails. Use all of your energy to focus on getting well again!

Hugs,
Karen

Karen,
Thanks for such a sweet, kind message. I really appreciate it. You have always been so kind and supportive. I stay updated with your site! How are you doing?
Laura

[Laura]

Originally Posted by Lisa V

Laura, I echo everything Karen has said. I follow all of your updates hoping to hear that life is getting better for you, only to hear of some new torture. I just wish I could do or say anything to help.

I always wonder if you knew what you know now, would you have made the same decisions, but of course that's not a fair question. You tried so many things before going the BMT route, and that was your only remaining option, so of course you had to take it! We all need to hear both the good and the bad to get a full picture, so your experience has been helpful in that respect. I just hope you find a doctor who can figure it all out and supply the magic bullet to make it better and give you your life back!

Hi Lisa,
Thanks to you too for the nice message.

It is funny you write the second paragraph. Because I have had a few thoughts in regards to this lately. But you are right....if I had know...what would I have done differently?....but I did what I thought was best at the time so I guess all I can do now is move forward.

I think the biggest thing would be....it is better to go to a big name place versus staying at a smaller place to be "close to home"....that would be my only big words of wisdom...

Laura

[Laura]

Originally Posted by squirrellypoo

Thanks for the update, Laura. I've checked in on your caringbridge page a couple times in the past weeks when I've been thinking about you.

I'm so sorry to hear things have only partially improved, and not enough to give you the quality of life you deserve. Who would've thought that the transplant would move you from one aspect of vampire territory (need for blood) into another (aversion to sunlight)? I'm glad to hear your gut is responding to the steroids, though it sounds like a lot of other baggage has come with it. At least you've got doctors at Boston that are willing to try different things, which always feels like progress to me. Hopefully you'll find some real improvements soon.

Hi Melissa,
Thanks for the reply. How are you doing with everything? I think of you often?
Laura

[Laura]

Originally Posted by tserdogan

I read your updates from caringbridge pages.
My opinion heat may be about the long term side efffects of prednisone.Thin skin and nerve damages are typical side effects of high dose prednisone.i hope when your prednisone dosage decrease to minimum levels,you will feel yourself good.

How are you doing? I miss seeing updates from you?

Funny you should mention Prednisone as a cause...because I have been wondering that myself....

Laura

[Laura]

Originally Posted by Marlene

I don't know what to say Laura. I cannot even begin to imagine all that you are dealing with these days.

With all the meds you are on, it makes it difficult to sort out things. Is there a possibility that the heat related problems are a disruption in your endocrine system.... Estrogen, progesterone and thyroid? All can cause huge temp swings for the slightest movement or minor increase in room temp.

Hi Marlene,
That is what I have been wondering myself....I am going to be looking into this with my primary/Woman's Health here and see.

Would that be just drawing estrogen/progesterone levels and thyroid test?

All I know is I am in such misery from this heat intolerance.

Laura

[Laura]

Originally Posted by evansmom

Hey Laura,

I too am at a loss for words. Of all the BMT journeys we have read, I just can't recall hearing someone speak of such diverse life changing symptoms. To be, in essence, severely allergic to light is hard to comprehend. And the heat intolerance, well, I just cannot imagine.

If their should be quality of life awards handed out for extreme patience and tenacity and perserverence, you would be enjoying the best possible life right now - you deserve it.

Something's got to go your way at some point. Maybe just like we know GVH can just 'burn out', so too could this, with any luck?

Just like Marlene suggested, are your estrogen and progesterone levels ok given the extreme heat intolerance?

Hi Nicole,
Thanks for the advice and kind words as usual. It is greatly appreciated. Will reply to your email here with more.
Laura

[Laura]

I had an eye apt yesterday. Mainly because I could tell my eyesight had changed and I needed new prescription for lenses. I had been putting it off due to the lights, but I finally went.

I have the start of cataracts in both eyes. But nothing that needs to be done right now.

Otherwise my skin is more flared due to extra exposure to the UV....so trying to get it back "under control"....

While looking into other things...

It's just so frustrating....

Currently my scheduled medications are:
40 mg Prednisone am
5 mg sirolimus am
20 mg protonix (for prednisone) am
5 mg norvasc (for prednisone) am
mepron
flovent

Fluconazole 200 mg daily

100 mg lyrica pm (have been trying to wean off was on 150 mg/bid)
20 mg protonix
5 mg norvasc
mepron
flovent

Prograf and Decadron swish and spit for my mouth

plus tons of prn medications....below are the ones I use more frequently
oxycodone
salagen
albuterol
insuiln (for prednisone)

I meet with Woman's Health in a week and am going to question hormones for some of this heat intolerance....
Laura

[squirrellypoo]

Originally Posted by Laura

Hi Melissa,Thanks for the reply. How are you doing with everything? I think of you often?Laura

I'm doing really, really well. The HRT patches have finally sorted out my libido and hormones (the new hospital gynae/endocrine centre is wonderful!), we've been progressing with the boat renovations, I've moved into management at work, and I found a new running group, which has been WONDERFUL for me. I'm actually running faster and farther now than I was before I got ill, and I even signed up to run my first half marathon(!!) in March, in Paris.

Thanks for the latest update. I'm shocked by the cataracts - have they said what might have caused that?

[Sally C]

Originally Posted by squirrellypoo

I'm shocked by the cataracts - have they said what might have caused that?

Hey Laura,
I too am so sorry for what you have been going through. Keep the faith.
As to the cataracts - they can be caused by steroids (Prednisone). My husband has the beginnings of subcapsular cataracts which are cataracts at the back of the lens as opposed to the front. He was given steroids before every transfusion he received for 2 years and is now on 20mg. per day of Prednisone for ulcerative colitis. In my research of cataracts I found that they can be caused by steroids.
Best wishes,
Sally

[Laura]

Originally Posted by squirrellypoo

I'm doing really, really well. The HRT patches have finally sorted out my libido and hormones (the new hospital gynae/endocrine centre is wonderful!), we've been progressing with the boat renovations, I've moved into management at work, and I found a new running group, which has been WONDERFUL for me. I'm actually running faster and farther now than I was before I got ill, and I even signed up to run my first half marathon(!!) in March, in Paris.

Thanks for the latest update. I'm shocked by the cataracts - have they said what might have caused that?

Wow Melissa, so happy to hear such wonderful news and a great report!!! I am so happy for you that things are moving in the right direction and it sounds like you have so much going for you!!! I'm so happy to hear.

The Prednisone is causing the cataracts.

Laura

[Laura]

Originally Posted by Sally C

Hey Laura,
I too am so sorry for what you have been going through. Keep the faith.
As to the cataracts - they can be caused by steroids (Prednisone). My husband has the beginnings of subcapsular cataracts which are cataracts at the back of the lens as opposed to the front. He was given steroids before every transfusion he received for 2 years and is now on 20mg. per day of Prednisone for ulcerative colitis. In my research of cataracts I found that they can be caused by steroids.
Best wishes,
Sally

Hi Sally,
Thanks for the note and explaining the cataract/Prednisone to Melissa.

Laura

[Marlene]

Hi Laura,

Here are the heavy hitters I can think of that they can check for you. I’m sure the prednisone is having an impact on your endocrine system, especially the adrendal glands. They are so critical to the proper functioning of the thyroid and ovaries.

DHEA Sulfate: Determine female infertility, amenorrhea or hirsutism; Aid in the evaluation of excess androgen/adrenocortical disease. (this may be off because of the steroids you are on)

Estradiol: Helps assess hypothalmic and pituitary functions, menopausal status and sexual maturity. You need to know what phase of your menstrual cycle you in when you have the blood drawn.

FSH and LH ( Follicle stimulating hormone and luteinizing hormone): helps to determine if you are in menopause and helps in the evaluation of suspected gonad failure.

Pregnenolone: Determine ovarian failure and adrenal issues. Again, may be off due to steroids.

Progesterone: Evaluate ovarian function

Testosterone total and free: Too low can cause hot flashes in women also.

TSH (Thyroid Stimulating Hormone): High levels indicate hypothyroidism which can cause hot flashes also. The medical community is split on normal reference ranges. There are still labs and doctors using the older reference ranges. More current doctors use the newer ranges and consider anything above 3 should raise a red flag that you could be hypo-thyroid and you need to further explore this. Especially if you have some hypo symptoms.

T3 and T4 levels: Helps to evaluate thyroid function.

Low sex hormones can affect the thyroid. Sometimes, by fixing the first, the second self-corrects. And it can take a while to get the right balance. Start low and go slow. You don’t want to flood your body with a high dose at first. I would highly suggest that if you need some hormone replacement, go with bio-identical topical hormones. You don’t need the added stress on the liver from oral ones. You can get a bio-identical Estradiol patch from the regular pharmacy. You would need a compounding pharmacy for the topical bio-identical progesterone, testosterone and DHEA. But I’m jumping the gun here.

[Laura]

Thanks everyone for all the tips/etc. I am sorry to leave you hanging. It just takes me so much effort to do everything, sometimes I have to pick and choose what to use my energy for.

Below is a copy and paste from my caringbridge site of an update. You can always find updates on there (even those have been sheldom and far between).


My hand is better every day. Still hard to type. Still have restrictions. But overall much better.

My right is extremely sore. I can't put any weight on it. My left one aches on and off very mildly. Thank God it isn't AVN (hip bone death); however, I have earned a ticket to ortho as the MRI of the right hip showed possible cartilage tear, inflammation, debris in the fluid, cyst, etc, etc (too much to type out). And they didn't really scan the left hip so who knows on that. I have NO idea what I could have done to cause the damage.

But I think it is comical and maybe I shouldn't. I can't really use my right hand. I can't put weight on my right hip. I can only use the crutch for the left side to try and help me walk....which is hobbling from the couch to the bathroom. Then skin on the bottom of my left foot peeled, so I have dressing changes for that and it hurts to walk or put weight on that. And I am supposed to put the least amount of weight on it to help it heal. Needless to say I am quite the sight.

Thank goodness for pain medication otherwise I would not be able to get off the couch. Sadly, I live in a two story house. And with not being able to use two crutches it is impossible for me to do stairs. So I have been camping out downstairs. I basically hobble (or Ryan pushes me in the computer chair) from the couch to the bathroom and back. Otherwise I live on the recliner couch. And use the wheelchair when I go to Mayo.

I am super excited about this derm doctor!! I had derm testing last week. So far reacting to pretty much all the tests. Today I had allergy patches placed on my back. Tomorrow I will have light applied to some of them. Wednesday they will do a patch check to see if I am reacting to the other ones. Thursday is my big derm apt to find out results and such. I also have this feeling that I will get many ideas of what to do to FINALLY get my life back and I CAN'T WAIT!!!!!!! Then Friday they will check the allergy patches again.

We have dropped the Prednisone a little bit. The side effects are becoming way to great. Last week I went from 40 mg to 35 mg. This past Friday (a week after the first drop), I went to 30 mg. We will leave it here for awhile as not to disturb anything. The Prednisone was being used to keep my plts up so pray those don't drop. It also cured me of all my GI symptoms so we need to be very careful of the taper so as not to cause the GI symptoms to return. And it was being used for my skin but not really sure if it is doing anything for that or not. Plus it seems derm wants me off the Prednisone. So pray my GI does not flare back up. It is all a very careful balance.

Even though I may look and sound like a train wreck. I feel so excited and happy to FINALLY feel like there might be an end in sight for all my issues. And I absolutely can't wait!!!

Pray for good healing post hand surgery.
Pray for my hip pain and it doesn't require surgery or anything serious.
Pray for the bottom of my foot to heal with no infection.
Pray my platelets remain stable.
Pray my GI remains stable.
Pray my skin doesn't go crazy with the drop in Prednisone.
And pray for guidance for the derm doctor so I can finally put all this transplant, etc, stuff behind me and continue on with my life!

Laura

[cathybee1]

I am sending lots of prayers your way.

[squirrellypoo]

Thanks for the update, Laura! I can understand why you don't have the energy or will to update more often, but I'm glad you do when you're able. I think about you (and the other "class of 2009" transplantees!) often. I'll send extra strong good vibes your way this week.

[mausmish]

Laura, Ditto on Melissa's post (except I'm class of 2010 :-). Hope you're feeling lots better soon!

[Laura]

I feel I can never catch up you guys....sorry....

Once again, I've been hit hard this week..the biggest thing is severe edema to my lower legs an nd feet..so I've earned myself cardiac and renal etc work up....also lungs are majorly acting up so earned a work up for that...

More as able....laura

[kjraimondi]

Originally Posted by Laura

I feel I can never catch up you guys....sorry....

Once again, I've been hit hard this week..the biggest thing is severe edema to my lower legs an nd feet..so I've earned myself cardiac and renal etc work up....also lungs are majorly acting up so earned a work up for that...

More as able....laura

Praying for you...