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. 

Almost Free!

Finally, I am almost out of here! This morning, my swelling seemed to be reduced, so they were able to move me to the regular medical floor of the hospital. I was hoping to get discharged, but the doctor wanted me here for another 24 hours just to make sure I wouldn't need any more IV medications. All of my medications have been switched to oral. Although I still have some swelling, it is more in my face and lips, which will likely take time to come down. My oral chemo dose increase was approved by my insurance, but I am hoping I can try to not increase it for now.

I am very anxious to get out. I am still somewhat uncomfortable with itching and burning, and I am exhausted. I am ready for my own bed, food, and rest. I just have to hold out until tomorrow morning! So close! At least in the mean time, on the medical floor, I am woken up a lot less. I also was able to take a shower, which felt amazing for the first time after 5 days, and use an actual bathroom.

Tomorrow, the game plan is to be discharged first thing in the morning, then to head home to get some actual rest. Thank you all again for all of your love and support, it has meant a lot to me. I am confident that things tonight will be smooth sailing, and I am counting down the hours! I will update again sometime this weekend after I catch up on some rest :)

A Chipmunk with Bad Botox

Good evening everyone! So, I got to move rooms, but STILL only within the ICU. This morning, they switched my steroids from IV to oral to prepare me to go home. Unfortunately, my body is not enthralled with the reduced steroid dosage, and instead wants to take its sweet time. I still have been Epi free, but the swelling is in my face, neck, lips and eyes, and they consider my neck swelling to be airway involvement. I look like a chipmunk who had bad botox. We are trying to see if we can increase the dose of my oral chemotherapy, Gleevec, to stay ahead of the curve.

They keep bouncing me around within the ICU as other patients come and get discharged. The step down unit is still full, so even though there are orders in place for me to be moved, there is nowhere for me to go. Because of my immunodeficiency, I have to have a private room, which complicates things. I want to shower SO bad, but I again know that I have to be patient to ensure that my momentum stays in the positive direction. At least this new room I got (5th room in the ICU) is a negative pressure/isolation room, so it is HUGE. 

In addition to a lack of shower, the ICU also comes with a lack of privacy and sleep. My mom has been able to come by after work every day to keep me company. Although it is a major bummer to be in here, and I have been pretty lonely, the nursing staff has been absolutely incredible. Every nurse I have had has been amazing and incredibly compassionate and caring. I am extraordinarily thankful for them, as well as the doctor who has been overseeing my case. 

So, the plan from here is to try to keep reducing the steroids as much as possible while making sure things stay safe. Lots of IV Benadryl and Pepcid to keep me comfortable through the process. I miss my bed, privacy and shower, so I really really hope they can get me out of here ASAP. In the mean time, I continue to count my blessings and maintain positivity despite the crummy circumstances. I requested a service dog visit and art cart visit for tomorrow, so hopefully that will help change the pace up as well.

Thanks again for all the love and support, and I will continue to try to keep you all updated!

Making Progress

Good evening everyone! I am happy to report that I finally feel like we are making some forward momentum on getting me out of this flare. Although I am technically still in the ICU, my status has been downgraded to the step down floor. They were supposed to move me, but the unit that is a care level below the ICU is full, so I am stuck here. Even though I am still here, the doctor told me that this does not necessarily prolong my stay, as long as I remain stable.

I  still have been epinephrine free for more than 24 hours. The next step is to switch my steroids from IV dosage to oral, and make sure that the swelling goes away. I am still in a reactive state, which they want to see go away.  I had a reaction to salt water yesterday-- I wish I was kidding. Luckily it was mild and responded to Benadryl, but it demonstrated that I am still hypersensitive. We suspect I reacted to a preservative in the prefilled syringes. I am on high doses of IV Benadryl and Pepcid around the clock, and still experiencing flushing and burning, which also is something they would like to see improved before discharge.

New note on my whiteboard thanks to preservative filled saline.

The doctor told me that my discharge depends on how I respond to the reduction in steroid dose.She also spoke with my mast cell specialist, and they want to get me out of this flare before putting me back out into the world of spring allergies. I am NOT happy that I have to restart the steroid taper, but I know that it is an important medication to include in my treatment protocol. There were some concerns yesterday about my lungs "falling asleep" from all of the inflammation, but that also appears to be improved today. I have been doing some lung exercises to work on making sure that I get oxygen to the entirety of my lungs, and I also have been trying to walk around as much as possible.

So, all in all, things are going in the right direction. I just have to continue to be patient and let my body heal. I am hoping to get out of here tomorrow, but it sounds like it depends on how the steroid dose change goes. At the very minimum I would be moved to a less "intense" floor. In the mean time, I finished my sticker book and tried to work on some assignments for my online classes, although I will probably have to revise them when I am out of a Benadryl fog.

I am VERY ready to get out of here, but I know that if I get discharged too early, I'm just going to end up back here. I am working on maintaining positivity and distracting myself to continue the forward momentum. I would love to be celebrating Passover and Spring Break with my family right now, but I am instead going on day 3 in the hospital. The chaplain's office brought me a little Passover kit, but of course, it is not the same as getting to spend time with friends and family. Just like I talked about in my post yesterday, I have to remember to count my blessings, and take things one hour at a time. Until tomorrow!

Much of the Same

Happy Sunday everybody! I hope you all had a relaxing day with your families. At least up here in the Bay Area, the weather looked really pretty from indoors :) I got to sit in the window sill for a few minutes today and get some natural Vitamin D.

Unfortunately my transfer out of the ICU was postponed again. I didn't have any major episodes, but I am still having some respiratory issues when I am walking, and my facial swelling hasn't let up much. I have not needed any epinephrine, which is REALLY good news. When I did have a little bit of trouble breathing, I responded to the meds right away,  which is all steps in the right direction.

Even though I am having facial swelling, we are working on reducing my steroid dosage to prevent any additional long term damage from side effects. Because I am still having some swelling, and because of the reduction of the steroids, they are keeping me in the ICU for one more night. Facial swelling itself is not necessarily dangerous, but because respiratory stuff involves my airway, they have to be cautious. Tomorrow I should be able to move to the step down unit, fingers crossed. Once I am there, they will probably keep me for another day or two to make sure that they can safely reduce my steroid dose without any further issues. The doctors want to see me out of this flare before I go anywhere, because this flare up has been so stubborn. I am working with my medical team to ensure that I don't get any fun hospital side effects while I am here, like wearing stockings on my legs that ensure blood flow, and using a breathing device to make sure I have good air flow in my lungs to prevent pneumonia.

I am working hard to maintain the positivity, and I can't thank you all enough for all of your kindness and support. It is frustrating to still be stuck here at all, let along in the ICU, but I am still counting my blessings. The hospital is a difficult place to be in, everybody around here is in crisis mode, and it is difficult to see patients and families suffering. Although my situation is not the greatest, I have to be thankful that I am conscious, not intubated, and moving in the right direction. I just have to try to be patient and let my body catch up. The ICU is almost empty, only 6 other patients.

For those of you who have followed my previous blog posts, I am still keeping track of my Beads of Courage. Every time I have a set back here, documenting it on my bead journal has been helpful in remaining optimistic, and I guess being as courageous as possible. Once a month I tell the Beads of Courage organization which beads to mail me. I have attached a photo of my bead journal from the last couple of days. I suppose it helps me not be discouraged by how slow the healing process is.

Bead Journal

I will post another update tomorrow.

Staying Put for Now

Hello everybody,
Happy Saturday! Here is your quick update for today. Although I was hoping to get out of the ICU today, my body didn't seem to agree with the idea. After breakfast, I tried to go for a walk with my nurse on the unit. I got my cough back, and it wouldn't stop. We tried a breathing treament, which didn't work, so I had to get another dose of Epinephrine in a shot, and in a breathing treatment. This didn't help my case to move me out of the ICU or reduce my steroids, 2 of my goals for today.

Since then, thankfully, I have had no other setbacks, and had a few successful walks. So, hopefully tomorrow I will be able to move to the step down unit, where they will continue to keep me until they can wean my steroids enough. In the mean time, I have been trying to keep occupied, watching Finding Dory, and I finished my rug hooking. All in all, things are stable. I am SO ready to go home, but I know I still have a couple of days ahead of me. Until tomorrow!

Reporting live from......

the lovely El Camino Hospital. I am going to start off this post by saying yes, I am fine! I would not be sitting here watching TV and typing this blog post if I wasn't. Because of the nature of my conditions and my history, they have to keep me in the ICU for close observation. But I am totally stable and on the mend.

This flare that I have been in for almost a month now since the TDap vaccine just does not want to let up. That, in addition to crazy amounts of pollen and rain this week seemed to be "the straw that broke the camel's back." My potassium was still low, so I was having to take supplements either IV at the infusion center, or orally every day, which I was also having reactions to. Yesterday (Thursday night), after dinner, I got a cough that wouldn't go away. I tried a breathing treatment, which only helped partially. Used my AuviQ (like an EpiPen), which stabilized me for the evening, in addition to enough benadryl to knock out an elephant.

I woke up again at about 5:30 this morning with lip and tongue swelling. I tried all of my home meds again, still with little relief. I went to the infusion center for my Potassium, and before they could even start the potassium, I began wheezing, so I had to use my AuviQ again. When that wore off, I was still symptomatic, which brought me to the hospital.

They were able to calm things down again pretty quickly with breathing treatments, monster doses of antihistamines, steroids, the usual drill. They had to give me more epinephrine (adrenaline), but luckily no drip. They transferred me up to the ICU for round the clock meds and monitoring.

So, today was not a fun day. However, I do really have to count my blessings. This is my first hospital visit since the beginning of February, a record for me. I am responding to medications, and not requiring an epinephrine drip. The hospital sucks, but I am comfortable, in my own room, and entertaining myself with my computer, sticker books, and rug hooking. It sucks that I will be missing my family's vacation, but I know it is best for me to stay here, and they NEED that vacation-- I insisted that they go since I'm just going to be sitting here getting IV meds for a few days anyways, and I am totally stable.

It looks like I should be able to be transferred to a step down unit in the morning. In the mean time, I am going to try to catch up on sleep and let my body do its thing. I have hung up my Beads of Courage on my IV pump as a reminder that this is just a speed bump, and a relatively minor one in comparison to the past.

I will post updates on the happenings here. Have a great weekend!