Tuesday, August 27, 2013

Vitamin Deficiencies and Progress

I apologize for not writing as of late, I have been very very busy!!  I started school again last week, which is my last year!! Finally!!!  I also have been doing pro bono research work on public health law and climate change.  Not to mention the normal items like work and taking care of my son!  I am pretty loaded down right now.

So first I will update as to what has been happening.  I actually have been more sick than usual as of late.  My GI doctor pushed me down to a phase one/two diet, which he said I should follow until things seem to stabilize.  I don't think though that my pacer is the issue, I am pretty convinced it is the implant in my arm causing this, I have always been sensitive to hormones and that thing does mess with my hormone balance, but my PCP doesn't want me to remove it just yet, she really wants me to talk to my GI doctor at my next appointment in the beginning of October to see what he says.  I am really hoping that this is just a phase that I need to work through or I can just get this thing in my arm removed and everything will be better.  It is hard to determine what is causing me to get so sick (nausea, vomiting, etc) because I got the implant in my arm about a week or two before my pacer implant.  I am actually getting more ill and more often than I was before my pacer.  The only reason I am convinced that it is the implant in my arm and the hormones is because I missed my period this month (no I am not pregnant) and I have been ill since then.  It is almost like once my body gets knocked out of that rhythm everything goes out of whack.  My PCP did give me some dissolvable Zofran because every time I feel sick and take my pills I would immediately throw up, so she is hoping that this will at least help take the edge off and not make me vomit!!  The dissolvable pills have never worked that well for me, but something is better than nothing!!  We will see what happens, but for now down to a phase one/two diet, which is basically a liquid/soft foods diet, I will upload the paperwork my doctor sent to me about it in another post, just so people can get an idea of what I am talking about.

On another annoying note, my PCP tested my vitamin D level because I have been struggling with this deficiency for years now and of course I am deficient.  The positive to it is that I am not as deficient as I have been in the past (although that isn't saying much because it is summer), but she did add another 2000 mg to my vitamin D dose per day.  This should help with how tired I have been lately.  I really should go get my other vitamin levels tested because I know potassium and B12 are always concerns too for most of us GPers, plus I know I have no calcium in my body because dairy has been off my edible list for years now.  It is always a battle, but hopefully we can figure out the cause of why I am more sick now and either up my pacer or take out this implant.  Then maybe I won't have to take a million vitamin supplements anymore and can eat a normal diet!  Plus be able to work out at the level I was able to before, a vitamin D deficiency really wears away at the muscles and heart, so it is always harder for me to work out when I am low.

I am going to end on a positive note here though, I have gained back two pounds, but since I have been getting ill again I have been just holding steady, which at this point is an accomplishment for me considering I had been losing about a pound a week before the surgery.  I always like to recognize the small victories because I know that it will take a while for everything to normalize, if things work out as planned.  For now though I am seeing the short term positive effects that I needed, now to figure out the more complicated aspects so I can be around to embarrass my son for many years to come HAHAHA

#gastroparesis #enterratherapy

Monday, August 12, 2013

Updates

So the surgery incisions seem to be holding stable, which is a good thing because I really don't want to have another surgery!!  In terms of nausea progress, I have been a little off in the last week, which is a little upsetting, but I hope it is just a passing phase.  I haven't really added any weight, but I also haven't lost anymore, so I am happy that I am maintaining weight.  I don't have another appointment until September, so we will see how things go until then.  So far though I like the progress, it is not 100%, but it is better than it was.

#gastroparesis #enterratherapy

Friday, August 2, 2013

So Thankful

So I wasn't sure which blog to post this on, so I will be copying it to both.  A year ago I went to the emergency room in Henderson, Nevada for what I thought was minor dehydration, it ended up being the scariest and clarifying night of my life.  The doctor told me that I might not make it through the night and that I may drop dead on the plane home the next day.  I was there alone.  Six months before that I was in and out of the hospital dying from malnutrition due to a dead gallbladder that went undiagnosed for three months.  The last time I went in they didn't think I had much longer because I couldn't even drink water and lost 30 lbs across the three months with about 10-20 mainly in the last month.  I felt like death, I felt how close I was and most of the time I was alone in that as well.  In the past year I have recovered to an extent, I do have permanent damage from the misdiagnosis and my heart problem will never be gone, but I am so grateful and thankful for the doctors and nurses who were there for me.  I am sitting here with my pacer now, hoping it will fix some of the residual issues, but it will never be a guarantee.  I can tell you though that I am so thankful that I wake up every single day and face the challenges that life puts in front of me.  It has never been easy and some days are really a struggle for me to keep fighting, but there is no way I am giving up.  With all the ups and downs I have in life I will always be grateful for every day that I am able to tell my son I love him, enjoy the weather, take a breath, even if I can't really eat much, be able to eat some delicious food, spend time with all the people I love around me.  Death and the threat of it puts what is important in life into perspective.  It isn't anything I would wish on anyone, my health life has been miserable, it is painful and you lose complete control, but I feel like it was the most humbling experience of my life.  Life is finite, if you don't love and live your life like any day will be your last, you will miss out on all the best things in life.  I choose not to be negative or miserable anymore, I choose to enjoy the life God gave me and live it to the fullest.  Take pleasure and joy in everyday because you never know when you all of a sudden lose an organ to death, your heart suddenly fails, I never ever expected these things in life, but they did happen and helped me immensely.  Love everyone as much as possible, find the good in life and not the bad, do things you were always afraid to do because that opportunity, that person or you could be gone in an instant.  Life is short and finite, not everyone lives to be 90, I am part bionic now and I wouldn't have it any other way because it helps me live to see another day, love another person and cherish every single moment.

#Gastroparesis #EnterraTherapy

Monday, July 29, 2013

Complications

So earlier this weekend I noticed some blood and drainage in my bra, less than a teaspoon per day.  The confusing part is that I have not had bleeding or drainage since the week after surgery.  It was also coming from the incision under my breast, which thus far has been healing the best with the least amount of problems.  I also slipped into an arrhythmia this weekend, it has been the craziest one I have had yet.  It started out normal, but things changed on Sunday.  I didn't pay too much attention to the bleeding and drainage thinking that I could just see the surgeon this week.  When Sunday rolled around my arrhythmia was out of control, not only was I doing the normal slow, my heart rate and blood pressure would jump very very high.  I called the nurse line just to talk to them about it and whether I was not being sensitive enough to the issue.  The nurse was concerned and said you need to be seen within 8 hours and scolded me for sitting on it all weekend and letting it drain, let the heart issues get out of control and let it become painful.  I went in and they basically turned me away as soon as I walked in, they called the on call surgeon and said if you don't have a fever you can leave.  I wasn't horribly disappointed because this is half what I expected because of the type of surgery and historically the ER's treatment of my complicated condition.

Today though I called and went in to see my actual surgeon, which is always the better option anyways.  He talked to me about it and said that my left breast is much more swollen than the right one.  He did say that he wasn't concerned yet and sometimes people can be sensitive to the placement and to give it one more month.  He was concerned though about the drainage, he didn't feel too much liquid around my device, but said to keep a watch on it and if I developed a fever to come in immediately and he would see me.  I had started feeling yesterday some pressure pain from the inflammation and fluid build up, which sometimes would throw off sharp pains.  He said that if this continues after this next month that I will have to get my device taken out and placed in my abdomen instead.  I really am not a fan of this option because it will bother me to no end and I have talked to many people who have complained about placement in the abdomen.  I really like it behind my breast, I think will just have to take it easier and really nurse it until I feel 100% again.  Still hoping that things will work well, just a couple set backs thus far.

On a lighter note, my boyfriend talked about the huge difference he has seen since I got this device.  I always think there isn't much change,  but then he points out that I don't get sick as often after I eat anymore, it is just hard to believe I could be starting to feel better.  I am glad to have his perspective on the outside because I am quite biased living with this my whole life.  Still feeling hopeful, just need to get over this little hiccup!

#gastroparesis #enterratherapy

Monday, July 22, 2013

The Costs

I just received my EOB and bills for my surgery, it cost over $66,000, which doesn't include individual doctor costs, medications and ongoing care.  I realized that my bills are getting steep and it is so stressful to pay all of them even with a job because of my need to take care of my son and other bills.  I started a gofundme site to help raise funds.  I do not get much support in general, but thought maybe some generous strangers will help me with my expenses.  I absolutely appreciate any help that anyone can give to me.  My hope is that this surgery will be a cheaper more permanent solution to my problem as opposed to taking medication the rest of my life.  Below is the site I set up for donations, any help would be greatly appreciated to help fund my recovery!

http://www.gofundme.com/3j8tb4

#Gastroparesis #EnterraTherapy

Sunday, July 21, 2013

Working Out, Allergy Update and Weight

So I am a little over three weeks post surgery and I worked out for the first time today.  I will admit it wasn't easy, I went pretty slow on the elliptical, but I was happy to get back to the gym finally!  I am sort of addicted to working out, so it was hard going for three weeks without working out! I did have a little discomfort in my breast with all the movement, so it will probably be a while until I can run or do anything high impact.  On the weight end, i have been holding steady, I did lose five or so pounds post surgery, but in the last week I have been holing pretty steady, which is a good thing.  I have been struggling a little with symptoms, but I have been trying not to take my meds most days, which was at my own prerogative, my doctor only reduced my medications. I know, I know I need to slow down, everyone keeps telling me that, but I am so eager to feel somewhat normal again.  On another note, I got most of the glue off and it is starting to look better, it is less red and no open sores.  The incisions though look excellent minus the allergic reaction. The one on my stomach looks like it won't be horribly noticeable and the one under my breast is also healing well. Things are looking good on the healing front, just need to slow down on the Gastroparesis healing part, I mean I have had it my whole life, so it might take a while for me to feel 100% or at least close to 100%.

Three weeks post surgery, the red and peeling is my allergic reaction

#gastroparesis #enterratherapy

Wednesday, July 17, 2013

Post Surgery....finally!!

I know, I know I have been slacking here on updating my progress post surgery, first I was recovering and couldn't stay awake long enough to write, then I was working on this insane online class I am in, but things have finally calmed down and I have a couple minutes to write here!



I went in for surgery on June 28th and it went very well.  As you can see from the pictures on my previous post, they inserted the pacer behind my left breast and the leads in my stomach, hence the incision in my abdomen.  The surgeon was all excited and said you will be out tomorrow and running in a week before I went into surgery, honestly I thought he was nuts!!  I came to from surgery and they had me in recovery for a long time because they were having a hard time keeping my heart and blood pressure stable.  Finally they got me into a room in the afternoon to rest.  The first day was honestly just sleeping a lot and being up to speed on painkillers.  I will not lie, sitting up and getting out of bed was insanely painful mainly because of the incision on my stomach.  Actually, the incision under my breast didn't really hurt the first couple days, well except when they lifted my breast to look at it, but the one on my stomach really sucked.  Needless to say, I was not out of the hospital the next day, I ended up staying in four days.  Day one really wasn't too exciting, they had to help me in and out of bed and tried to get me walking a little that night, but I barely made it out of the room before I had to turn around and go back into my bed.  The second day was better, I was able to get up and walk more and I was able to start getting helping a little to get myself out of bed.  The one thing that kept getting worse was that I was super bloated, like 5 months pregnant bloated, I actually think that is what made the abdominal incision hurt more.  I started to be weaned back onto food, but to be honest I did not really have the appetite for it at that point because I was so bloated and uncomfortable and in pain.  The painkillers did their work well though, I got a ton of sleep while I was in the hospital!  By the third day I was starting to do more on my own, but they didn't want to let me go until I had something more than clear liquids to drink and I could take oral pain killers.  By day four I was on the full liquid diet and was able to take my pain pills by mouth, plus I could walk around the ward at least twice.  It is insane that the night before surgery I was out running and then I could barely walk afterwards!

I would say the worst part when I got home was the bloating, it took about a week or more until it really died down and I got things moving through.  The doctor kept telling me that things would get better the faster I got off the pain medication because it is contributing to the bloating and basically stopping my system altogether.  I slept a lot the first couple days and didn't leave the house because I was slow moving.  The doctor told me to walk 30 minutes per day, which I kind of had to work up to with the heat that has been around here and the incisions and pain killers slowing me down.  I honestly felt like an old grandma.  Also, after I left the hospital and the last day I was there man did my breast hurt ahhh it was crazy!  It felt like a super super sore muscle, which I assume is what it was a bruised muscle or healing while the device was setting in place, let me just say nothing really relieved the pain besides the pain killers, I got special bras and went without one, it didn't really matter, to be honest the only way I could sleep at night was if I was taking the pain killers.  I actually for the most part didn't need the pain killers every four hours like was prescribed on the bottle, I was basically down to one or two a day by two days out of the hospital (6 days post op).  I ended up developing some really bad anxiety from the Percocet, so I had to switch to Vicodin literally a day or two before I stopped taking them altogether.  I took my last pain killer the Sunday after surgery so 9 days post op, which I think was really good.  There was one other day later that week where my breast was sore, so I took it to go to bed at night, but otherwise I got off the pain killers fairly quickly.  I will say that with a caveat though, I am not a fan of painkillers, so I was still sore, but it was more so like I just worked out sore feeling under my breast.  For the abdominal incision I basically didn't have much pain there after I left the hospital unless I laughed, sneezed, coughed, etc.  I went into my surgeon about a week and a half post surgery and he thought my incisions looked great and I told him they were already starting to itch, which is a good post op sign that it was healing.  I went to my GI doctor the next day for my one week follow up and he was pleased with my progress, since surgery I had only thrown up once and had a couple bouts of nausea, so he upped my device a little bit, lowered my doses on some of my medications and took me off one, which I was really excited about because I had to take that one four times a day, it was a liquid and very annoying to lug around.  My GI doctor did tell me after surgery and after the adjustment that it would take a while to see results, so I have been trying to be patient with it.  He also said that I need to ease myself back into eating food, especially things I have not eaten in forever.  So far it has been pretty good.  I have only had one setback and it was that today I went into the surgeon because the incision on my stomach was peeling, but the skin under was raw and had sores.  The surgeon said that I was having an allergic reaction to the Dermabond used for sealing the wound (as opposed to stitches or staples), but to be safe, since an infection would be very dangerous with an implanted device, he prescribed me a week of antibiotics to ensure that no infection formed or the curb one that may be in the beginning stages from this reaction.

I did have a rough time with eating the first couple days, but more so from the bloating, surgery and pain killers basically stopping my system, so I will admit that I lost another 5-10 lbs post surgery, but I have not lost any since then, I haven't gained any, but my doctor said I was in a safe range and that he was happy to see that I wasn't losing any more weight and at least maintaining.  I am really hoping that I can continue down this recovery path, get over this allergic reaction/infection and start a new life, my GI doctor is very optimistic and very supportive, so it is making me feel more confident and optimistic about the ultimate success of this surgery.  I will add as a note, without the allergic reaction/infection I would be almost completely healed up, my incisions don't hurt at all anymore, my breast is not sore and I feel normal again at least from the surgery perspective and I am a little less than three weeks out.  I went back to work the Monday after surgery, so 10 days after and I will admit it wasn't easy, but mainly because of how tired I was and I am glad I did, getting back into the normal routine made the recovery minimized and honestly by the end of the second week I would say I was about 90% in terms of surgical recovery.  Feeling almost 100% now if it wasn't for that pesky reaction, but it should be gone within the week :-)

Feeling great about everything and so thankful that I made it to this point at least where I made it through the recovery, it was rough at some points, but in the long run was actually pretty quick and not horrible :-)

#Gastroparesis #EnterraTherapy