Home Sweet Home

After one final night on the medical floor, I was finally released on Thursday morning! It was a long week in the hospital, 5 nights in the CCU/ICU. Needless to say, I am pretty physically and emotionally drained. Timing worked out well in terms of transitioning back to home support, as my family was planning on coming back on Thursday anyways.  The first thing I did when I got to the medical floor was take a shower, which helped me tolerate being there until Thursday morning. The doctor wanted me in the hospital that one extra night in case I needed any more IV meds. Once I was cleared Thursday morning, my neighbor was kind enough to take me back home, where I was able to take a real shower, without having to worry about getting my accessed port wet, and took a nap.

Added in a picture of a mast cell so the link photo isn't my red face :)

Although I am incredibly thankful and appreciative to be home, I am not going to lie and say that it is an easy transition back. Even with all of the support of family, it is very physically exhausting to do much of anything. I am also still extremely reactive, so I am requiring Benadryl around the clock 24/7. If not, I wake up with a burning, painful itchy rash from head to toe. The picture on here was taken Wednesday night when waiting for Benadryl to kick in:

This is more severe than the rashes I am currently getting, but give you an idea of what I am dealing with. The lip swelling has returned a little bit since this picture, but only on one half of my face-- it looks like I am trying to do some weird half pout thing. It is hard to satisfy the itch, because as you can see, when I itch, it turns into welts which burn. The itching is deeper below the skin, so sometimes ice helps "cool" it down a little bit, but it mostly is only aided by Benadryl. Benadryl is a wonder drug, but also adds to the further fatigue.

Food also continues to be a little bit of a challenge. I am surprised to see myself writing this on a public forum like this, but I guess while I am at it, I might as well "spill the beans." Throughout this entire two year struggle with Mast Cell Disease, I have developed somewhat of a disordered relationship with food. It isn't because of being scared of reacting to the food, which I know is a big issue for a lot of people with Mast Cell, but rather is more weight related. The medications I am on to treat my Mast Cell Disease, particularly Prednisone, dramatically affect appetite, and weight distribution. Some of the worst side effects are "moon face," which I have had for a few months, and accumulation of fat in the face and stomach. as well as hair loss, which has been a recent issue. This really impacts my self confidence and perception of self. Especially when I am in the hospital, I don't eat, because the food is either gross, or I have no appetite from the medications. This, in combination with adrenaline and an increased heart rate leads to weight loss. When I get out of the hospital, since I haven't eaten much, I can't tolerate large meals, and then struggle to get enough food in. Although I know that the effects are technically reversible, I always fear that they won't be. 

The best way to describe it is that when things are so out of control with my physical health, and I am in these horrendous flares, I seek to control what I can, which in this case, is food intake. This is something that I am working on with my family, friends and physicians, that it is better for me to be fat and jolly and healthy than skinny and miserable. Although lower calorie intake can't make my condition worse, it probably doesn't help either. Over the last couple of days since discharge, I have been working on eating more, and not forcing myself to eat at one sitting, but to rather pick throughout the day when I am hungry. I know it drives my family nuts, but I think that will be a more positive experience than having hunger fluctuations throughout the day from forcing myself to do three large meals a day. This will continue to be a lifelong work in progress, but just doesn't help with the current scenario. 

Since coming home, I have not had to use any epinephrine or my nebulizer, both of which are great news. Benadryl can (and will) continue until I can get out of this flare. I am waiting to hear back from my doctor about increasing my oral chemotherapy. It was mentioned as a possible option, and my insurance approved it, but I am concerned about the side effects, including fluid retention and secondary cancers. Over the weekend, we discontinued any additional supplementation of potassium to see if my body can maintain the potassium that was given to me IV in the hospital. We are rechecking it Monday, and I can imagine that may have some influence on whether the dosage is increased as well. We are going to try to stop the infusions all together to get me ready to go back to school, and instead do oral dosing, which is again difficult because I seem to be allergic to all forms of potassium, IV or oral. I was originally doing saline infusions 3x/week for my POTS (Postural Orthostatic Tachycardia), but since my heart medication appears to be working well, they had reduced to once a week, and drinking 2-4 L of water a day and extreme salt intake was added instead. I went down to once a week primarily for potassium infusions, and we will see this week if we will stop them all together, except for IV Benadryl when needed (if the infusion center is willing to do, which I am not so sure of since that is where they had to call 911 on Friday).

Anyways, I apologize for my rant. I am super happy to be home and out of the hospital. You get no sleep there, and it is extremely difficult to have people dying literally all around you. I just am frustrated because you hope to get home and feel 100% recovered. I have to count my blessings- I am resting from home, and my lungs are cooperative. One of my closest friends has been living in the hospital for months from this horrible disease, and many others struggle a lot more than me. I do feel a LOT better than when I went in, just again, I am inpatient and want to be back at 100%. I know it will take time and rest, and I guess that is my plan in the mean time.