Met with Dr. Nash and
the Long-term follow-up provider at the clinic yesterday. We went over all of
my 1 year post transplant test results and also talked about the plan for the
next 6 months. As I said last time, the BMBX results were all good, my bone and
lung scans were both the same as last time (good news that nothing has
changed). Yesterday I learned that my immunoglobulin levels are very low but
this is something that is totally treatable. So, I will be going into the
Kaiser infusion center once a month to get IVIG infusions. This should help
boost my immune system a bit.
Dr. Nash is also looking to start tapering my 2nd immunosuppressant medication
(Siralimus). We are going to do it slowly and monitor my levels weekly to see
how it goes. Once I can get off of this second immunosuppressant (a couple more
weeks if everything goes according to plan and no GVHD symptoms pop up), Dr.
Nash believes it would be a good time to start my re-immunizations!!! I am
super excited about this (even though it is a year long process) because it
will mean that I will be that much closer to being able to safely be out in
public places and get back to my previous line of work! :). Sounds like I will
start with my first round of shots in late June or early July and then have
another round about 2 months after that. Then 1 more round a year after that,
but between the 2 month and 1 year vaccinations they think that I should be
able to get back out there for most things (see clients in the office, go to
the zoo with Scott, etc). No ERs for work till the 1 yr vaccinations, but every
round is one step closer! :)
We are now also actively working on getting me off the daily IV infusions. This
week we are holding the fluids and then I will do some extra blood work on
Thursday to see where my levels are without the IV supplements...if I can maintain
normal magnesium, potassium, and BUN levels (electrolytes and hydration are the
biggest issues) then we should be able to stop the fluids. Then I will just
have to wait till Dr. Nash says it is okay to get rid of this darn PICC line in
my arm! I am really hoping that it will be sometime before the summer, but
we'll see. I have learned my lesson with asking to get my lines out early
(every time I have done his, I have ended up needing line access again and had
to get another one placed).
My energy levels have improved a bit with the steroid replacement medication to
treat my "adrenal insufficiency" and the medication that they started
me on for the wacky potassium levels seems to be working well so far!
Things are looking up! I got to spend my first mothers day at home on Sunday
(last year I was still in the hospital's isolation/BMT unit). It snowed about 6
inches, so we just stayed home and I enjoyed quality time with my boys, exactly
the way I had hoped to spend Mother's Day this year!
That's about all I have for now...waiting to schedule my IVIG infusions,
getting ready to taper down/off one of my meds, planning for my first round of
immunizations, and hoping to be done with my daily IV infusions and my PICC
line soon!
-Chellie
Wednesday, May 14, 2014
Friday, May 2, 2014
Zits are the pits
Its been a while since I updated last and that is because I've been super busy. :-) Celebrated my 1 yr “re-birthday” on Saturday April 26th! We took family pictures with our favorite photographer and went out to dinner at my favorite Asian fusion restaurant to celebrate! I haven’t heard any official results from the molecular/genetic review of my bone marrow biopsy last month, but this is a good thing (no news after this amount of time is considered good news in the world of oncology…they would have called me immediately upon receiving the results if they were concerned). I have another appointment with Dr. Nash in 2 weeks so I can confirm everything then, but I am confident that things are the way they are supposed to be on this front.
These past few weeks have been very interesting medically. I had several medication changes (all from one appointment) and subsequently had a couple of pretty severe reactions to all the changes. My face broke out BIG TIME and I got acne for the first time in my life! I had always been very lucky to have clear skin (maybe it was all the chlorine & chemicals in the pool where I spent many hours each day as a teenager, that kept my skin so clear? :-) hahaha. Nonetheless, this recent breakout was terrible. I never realized how badly acne hurt! I saw a dermatologist and he prescribed me some topical antibiotic and recommended an over-the-counter medication as well which he described as a “corrosive agent”…(not something I wanted to hear about in reference to my skin)…but I was willing to try almost anything to get the acne under control.
In addition to the acne, I had to make an urgent appointment at the clinic last week due to painful swelling in my lymph nodes under my armpits. It was reassuring to hear from Dr. Nash’s partner, Dr. Brunvand, that he didn't think it was anything serious (ie: Lymphoma…which I was worried about) but rather it was likely a reaction of my immune system as I was fighting off a virus of some sort. The painful/swollen lymph nodes have since resolved and I am feeling fine on that front.
My immunosuppression levels have increased significantly over the past few weeks and my doctors aren't sure why (I had been on the same dose of medication for months and all of a sudden my levels shot up)…so we have been working on “tweaking” these medications. Each week it seems as though I am doing something different (cutting down on doses, taking meds every other day instead of every day, etc). I have more bloodwork scheduled for Monday next week to check these levels again and see where we are as far as these go. It’s a very delicate balance because if they are too high then I am very susceptible to infections & viruses and am likely to get sick…but if they levels are too low or drop too fast then I could very likely have the GVHD issues pop up again. I am a bit nervous about this and keep praying that the levels will even out and I will be back in my “target range” without dipping too low!
As with all things in our bodies, all of these other changes I've mentioned above were coupled with changes in my body’s ability to absorb & regulate electrolytes…so my potassium levels have been all over the place. Potassium is one of those things that we need for cardiac function and its extremely important that our potassium levels are regulated correctly. Unfortunately mine have been out of whack for about 2 weeks now. Its started with ‘hypokalemia’ which is not enough potassium and has all sorts of side effects. Then because I was so low, they increased my potassium intake (pills & IV fluids) and it swung me over the other side of the spectrum and as of Monday I was ‘hyperkalemic’ which is a bit more scary…so they stopped all of my potassium (oral & IV) and we are “regrouping” with a different medication (a potassium sparing diuretic) and increasing my potassium intake through my diet. We’ll recheck this level tomorrow and see where I stand on this, and go from there.
Lastly, I completed an “adrenal stimulation test” on Tuesday. It sort of reminded me of the gestational diabetes test that you take when they draw your blood, give you a medication/make you drink that nasty orange sugar water, and then draw your blood again. Instead of drinking a medication (like the diabetes test), they injected me with a hormone that is supposed to stimulate my adrenal glands to produce cortisol. My doc just called me a few minutes ago with the results and said that my adrenal glands aren't functioning as well as they should be (below normal) and that they are going to prescribe me some “replacement steroids” to help replace the cortisol that my body should be making but isn't. The doc explained that this is a common occurrence for patients who have been on long term steroid treatment (I had been on some sort of steroid for the past 9 months, and just got off of the last one about 2 weeks ago) and that our bodies get lazy when we are taking oral steroids and our adrenal glands often stop making their own natural steroids (cortisol). This is likely the explanation for why I've been so tired recently and the doc thought that once I started on the synthetic cortisol replacement that I would feel more energy. I am looking forward to this but I’m also a bit nervous about if it will affect my sleep like the previous steroids did. It’s a different type of steroid, so hopefully they will do their job and not have all the nasty side effects that I experience with the prednisone!
So, that’s everything that has been going on with me for the past few weeks. Everything is in flux and I’m just trying to be as flexible & fluid as possible to get through it. (just a speedbump in my trip). It reminds me how delicate our systems are within our body and how a couple little changes might not seem like a big deal on paper but when you experience all the effects of those changes in multiple systems, it adds up! Its been a bit of a roller coaster over the past few weeks but I am so thankful that everything has been managed on an outpatient basis and no hospitalization has been required during this transition! J I attended my first “cancer survivorship” group through Kaiser last week and was reminded of the importance of mindfulness so I have been practicing that as much as I can through prayer, medications, guided imagery, etc. Its funny how these are skills that we use with our mental health clients quite often but I had gotten “out of practice” with many of them and the topic came up a group and reminded me how much better I feel when I utilize these coping skills daily!
Thanks for all of your continued support and ongoing prayers! I appreciate them much more than you will ever know! I attribute a lot of my recovery to the amazing support system that I have and can’t thank you all enough! I am one lucky girl :-)
-Chellie
These past few weeks have been very interesting medically. I had several medication changes (all from one appointment) and subsequently had a couple of pretty severe reactions to all the changes. My face broke out BIG TIME and I got acne for the first time in my life! I had always been very lucky to have clear skin (maybe it was all the chlorine & chemicals in the pool where I spent many hours each day as a teenager, that kept my skin so clear? :-) hahaha. Nonetheless, this recent breakout was terrible. I never realized how badly acne hurt! I saw a dermatologist and he prescribed me some topical antibiotic and recommended an over-the-counter medication as well which he described as a “corrosive agent”…(not something I wanted to hear about in reference to my skin)…but I was willing to try almost anything to get the acne under control.
In addition to the acne, I had to make an urgent appointment at the clinic last week due to painful swelling in my lymph nodes under my armpits. It was reassuring to hear from Dr. Nash’s partner, Dr. Brunvand, that he didn't think it was anything serious (ie: Lymphoma…which I was worried about) but rather it was likely a reaction of my immune system as I was fighting off a virus of some sort. The painful/swollen lymph nodes have since resolved and I am feeling fine on that front.
My immunosuppression levels have increased significantly over the past few weeks and my doctors aren't sure why (I had been on the same dose of medication for months and all of a sudden my levels shot up)…so we have been working on “tweaking” these medications. Each week it seems as though I am doing something different (cutting down on doses, taking meds every other day instead of every day, etc). I have more bloodwork scheduled for Monday next week to check these levels again and see where we are as far as these go. It’s a very delicate balance because if they are too high then I am very susceptible to infections & viruses and am likely to get sick…but if they levels are too low or drop too fast then I could very likely have the GVHD issues pop up again. I am a bit nervous about this and keep praying that the levels will even out and I will be back in my “target range” without dipping too low!
As with all things in our bodies, all of these other changes I've mentioned above were coupled with changes in my body’s ability to absorb & regulate electrolytes…so my potassium levels have been all over the place. Potassium is one of those things that we need for cardiac function and its extremely important that our potassium levels are regulated correctly. Unfortunately mine have been out of whack for about 2 weeks now. Its started with ‘hypokalemia’ which is not enough potassium and has all sorts of side effects. Then because I was so low, they increased my potassium intake (pills & IV fluids) and it swung me over the other side of the spectrum and as of Monday I was ‘hyperkalemic’ which is a bit more scary…so they stopped all of my potassium (oral & IV) and we are “regrouping” with a different medication (a potassium sparing diuretic) and increasing my potassium intake through my diet. We’ll recheck this level tomorrow and see where I stand on this, and go from there.
Lastly, I completed an “adrenal stimulation test” on Tuesday. It sort of reminded me of the gestational diabetes test that you take when they draw your blood, give you a medication/make you drink that nasty orange sugar water, and then draw your blood again. Instead of drinking a medication (like the diabetes test), they injected me with a hormone that is supposed to stimulate my adrenal glands to produce cortisol. My doc just called me a few minutes ago with the results and said that my adrenal glands aren't functioning as well as they should be (below normal) and that they are going to prescribe me some “replacement steroids” to help replace the cortisol that my body should be making but isn't. The doc explained that this is a common occurrence for patients who have been on long term steroid treatment (I had been on some sort of steroid for the past 9 months, and just got off of the last one about 2 weeks ago) and that our bodies get lazy when we are taking oral steroids and our adrenal glands often stop making their own natural steroids (cortisol). This is likely the explanation for why I've been so tired recently and the doc thought that once I started on the synthetic cortisol replacement that I would feel more energy. I am looking forward to this but I’m also a bit nervous about if it will affect my sleep like the previous steroids did. It’s a different type of steroid, so hopefully they will do their job and not have all the nasty side effects that I experience with the prednisone!
So, that’s everything that has been going on with me for the past few weeks. Everything is in flux and I’m just trying to be as flexible & fluid as possible to get through it. (just a speedbump in my trip). It reminds me how delicate our systems are within our body and how a couple little changes might not seem like a big deal on paper but when you experience all the effects of those changes in multiple systems, it adds up! Its been a bit of a roller coaster over the past few weeks but I am so thankful that everything has been managed on an outpatient basis and no hospitalization has been required during this transition! J I attended my first “cancer survivorship” group through Kaiser last week and was reminded of the importance of mindfulness so I have been practicing that as much as I can through prayer, medications, guided imagery, etc. Its funny how these are skills that we use with our mental health clients quite often but I had gotten “out of practice” with many of them and the topic came up a group and reminded me how much better I feel when I utilize these coping skills daily!
Thanks for all of your continued support and ongoing prayers! I appreciate them much more than you will ever know! I attribute a lot of my recovery to the amazing support system that I have and can’t thank you all enough! I am one lucky girl :-)
-Chellie
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