When will I learn that life with mast cell disease doesn't ever work the way we think it will??? I apparently naively thought that once my crazy week of tube change, trip to MN, Xolair, and port surgery was over that things might calm down....my mast cells had one thing to say to that...NOT GONNA HAPPEN!!!!
I had planned to spend the rest of the week at home recovering from surgery, and I did for the most part. Until Friday at least...
Since this particular flare started, I've having episodes of massive GI emptying that is leaving me seriously dehydrated with electrolyte abnormalities and the inability to remain vertical for any length of time. As you may know, I pass out often. Rule #1 in our family is Don't Pass Out! When I'm having these episodes, however, my tolerance for the upright position decreases to about 60 seconds...barely enough time to get from the bed to the bathroom.
When this happens, we are ending up in the ER for fluids, often electrolytes, and making sure I'm not having any indication of a bad mast cell reaction since my oral and liquid meds are not being absorbed during these episodes (or at all, but that's another issue...). And that is where this whirlwind of 24 hours started.
On Friday the 23rd, I was having one of the roughest days I've had in a while. My standing tolerance was only about 45 seconds and even sitting up was causing symptoms. When Nick got home from work, we headed out for a Boka style date night.
The best part about this date night was that it was our first chance to test out Mort! I am so thankful to be able to share that he worked perfectly! I actually expected it to hurt more getting accessed because I was still sore from surgery, but it wasn't bad at all. Plus, once the needle was in, that was it! Blood return was great for collecting labs, and we didn't have to worry about how much blood the nurse could get before it stopped flowing, especially with how dehydrated I was. I got hooked up to fluids and was given my meds all through Mort and there was no worry I would blow the IV or anything. I can definitely say that having Mort was great!
When my blood work came back, my potassium was low (again). We had just been in the ER the previous Sunday and my potassium had been low. On Friday it was considerably lower, even after having it treated on Sunday...and this time it was so low that it was going to take about 8 hours of potassium infusions to get it back to normal. When my nurse told us that, we knew I was going to be admitted. The ER doctor said if they ran potassium all night, hopefully by morning it would be back to normal, and I could be discharged. Sounds simple, right??
Nick and I figured that since this was a simple straight-forward issue, being admitted to the tiny, local hospital would be okay even though we avoid it for any of my normal issues. If there was a lesson to be learned in all this craziness, it is that with mast cell disease, NOTHING is ever simple. There were some extenuating circumstances that made things worse than they might have been on a regular day, but the bottom line is that this hospital is just not set up for complex cases, and even though it should have been a straight-forward fix, mast cell disease adds another level of complexity even to something as easy as raising potassium levels.
I was able to receive 4 hours worth of potassium in the ER before being admitted along with a bag of fluids and a couple rounds of IV medications. It was about 1:30 in the morning before I got taken to my room, then the nurse had to run down her whole admission checklist. I just wanted to get the next round of potassium going so I could be discharged early-ish the next day (or technically the same day now), but my nurse said the admitting doctor hadn't ordered anything yet so she had to wait for the orders.
It was close to 3 am before Nick and I were finally able to get some sleep, only to be woken about 5 am for bloodwork. At that point, my nurse told us the doctor wasn't going to order anything until he saw the morning labs and came by to see me during his rounds. In addition, the pharmacy didn't carry half my meds (big surprise...) so Nick had to run home to bring my meds from home for the pharmacy to approve before I could take anything. Plus, the doctor refused to even have benadryl or pepcid as PRN orders (in case of a mast cell reaction) until he came to see me. Thankfully it had only been a few hours since my last ER dose, so we figured I'd be okay for a bit until things got straightened out.
The doctor came around about 10 am, and I'll be honest, I was very frustrated by this point. NOTHING had been given to me since the ER, and it was Christmas Eve...if they weren't going to do anything I did NOT need to be sitting in the hospital. Thankfully, the doctor ended up being pretty good and there had been some miscommunication from the ER so he didn't realize how low my potassium had been. Sure enough, when he looked at my morning labs, my potassium was still very low. He was going to order 2 more rounds of IV potassium, but we asked if we could try one IV and one down Herman so that we could leave sooner since each IV dose takes 2 hours. Plus we asked that if my potassium was still low if I could be discharged with a prescription for more down my tube at home since that is what the ER had done last week. He wasn't thrilled with the idea, but agreed probably because it was Christmas Eve.
And that's where things started getting fun...when the nurse came in to hang the IV potassium and give me the liquid for my tube, we discovered that Herman was clogged...very badly...Both the nurse and I worked to get fluid down and it was NOT happening. Eventually, she had to go page the doctor (who had gone home by now) and tell the resident. The resident put in a consult with GI, and said that I had no choice but to do the second IV dose at this point. We knew he was right, but it was still frustrating because it meant another 2 hours before I could be discharged.
Meanwhile, it's now almost noon and the pharmacy had still not yet approved my medications. The benefit I had gotten from the IV meds in the ER was all but gone, and I was starting to have more and more symptoms. Compounding my reactivity was the fact that we were pushing large amounts of Coke and Ginger Ale down Herman trying to unclog him, both of which make me sick. We asked the nurse multiple times for both my meds and to have IV meds ordered (since I couldn't do any of my liquids down my tube) but the resident said I couldn't take anything until he came to see me...
It finally got to the point where we explained to the nurse that I was in the beginning stages of a mast cell reaction and if I didn't get benadryl and pepcid, I could very well end up in anaphylaxis. To my nurse's credit, she went back to the resident and basically told him I needed the meds NOW and couldn't wait. Seriously, nurses have kept me safe so many times when doctors can't be bothered! I was able to get the IV meds I needed and about half an hour later, the rest of my oral meds, so we were able to avoid a severe reaction.
My 2nd dose of IV potassium finished about 3:30 pm, and then we had to wait 2 more hours before they could draw the labs. In the meantime, we kept trying to get Herman to unclog. We had moments of thinking we had a breakthrough only to have the next syringe be just as tough as before. Plus we kept asking to see the resident who still hadn't been in to see me by 5:30 pm when the nurse came for the blood work.
It was almost 6:30 pm before we saw the resident. My blood work still hadn't come back, so we were discussing what had happened so far. He asked about my tube and said he had put in for a consult with GI. When we said we hadn't seen anyone from GI, he said that just meant he must have gone home already and would come by during his rounds on Monday...yes, Monday. There was no way I was going to spend Christmas in the hospital to wait for a GI doctor who had no idea of anything to do with my care...if I was going to be without nutrition either way, I didn't see any reason to be sitting in the hospital when nothing was going to be done on Christmas. Unfortunately, the resident didn't seem to agree...He said we could discuss it again when my blood work came back.
And then my blood work came back...Remember how the ER said it was going to take about 8 hours of infusions to get my potassium back to normal? Well, after all that, my potassium had only come up half as far as it should have...I thought we were for sure spending Christmas in the hospital...But the resident surprised us!
By this point, we could sometimes get a little bit down my tube if we held the syringe a certain way and pushed really hard (and ignored all the liquid that oozed out onto our hands and the bed...). The resident said that if we could get another 40 meqs of liquid potassium down Herman, he would discharge me with a prescription for more potassium and would be satisfied that my tube would be okay until Monday. Challenge accepted!
I figured we were pretty much home free because I was determined to make my tube work whether or not it wanted to. While my nurse went to get the potassium to put down Herman, the nurse tech came in to take another round of vitals. And she was wearing a scented lotion...I immediately started to react, Leni came over and alerted, and Nick went to find the nurse to get more IV benadryl. Thankfully we were able to keep my reaction under control which was good because I thought that had just sealed my fate to spend Christmas in the hospital.
Once we got my reaction under control, my nurse gave me the potassium that I had to get down Herman to convince the resident I could go home. To be completely honest, I think more liquid ended up on my hands and the bed than down my tube, but it was enough to convince him! He was probably getting just as frustrated having me in the hospital as I was being there! We finally got discharged about 9 pm on Christmas Eve...talk about a Christmas miracle!
As soon as we left, we headed home to quickly pack for our trip to VA to visit my family. We spent the night and a few hours Christmas morning with Nick's family, then drove to VA to spend this week with my parents. And that is how we spend our holidays in Bokatopia! Talk about a whirlwind!