Sunday, September 26, 2010

Another "Bad" Day(s) for Me

Friday I ended up in the ER again with the same "episode" I had 22 days ago. Scott was able to drive me there so I didn't need to call an ambulance. It came on slower than the other one and didn't get as intense - as in my heart rate did not go in the 180's, but *only* the 130's - BUT the same culprit was found - low potassium. I was admitted and here I still sit. MANY tests have been run and the hypothesis as of today is that I have Salt Wasting Nephropathy. That means despite my body needing sodium I am dumping it out in my urine in large amounts (impressive amounts the Nephrologist says) and it is taking along with it potassium. So the hypokalemia (low potassium) is secondary to the hypoatremia (low sodium). Why is this happening? Who knows. The Nephrologist says he knows how to treat me, but we will probably never have an answer as to why my body is doing this - Was it a virus? Was I born this way & up until now my body has been compensating well? - who knows. I was started today on a potassium-sparing diuretic in hopes that my kidneys won't dump so much potassium. When I finally get out of here (hopefully tomorrow a.m.) I will have weekly labs for about 2 months monitoring my levels. The Nephrologist wants to see what my body does and have time to analyze it before we meet again in 10 weeks. (((Sigh))) As if we needed more on our plate!

Tuesday, September 21, 2010

Lots to think about

So...Scott and I have been questioning Shelby's ammonia level being elevated again due to her behavior. We requested labs be done so I took her on the 13th before school to have labs drawn. Her ammonia came back at 76 - up from 52 on August 3rd, but not as high as it was on July 20th which was 120. So, it was decided that her med would be increased by 1/2 a pill. That is going o.k. except that she is having more trips to the bathroom, but nothing horrible. The big shocker with her labs came in that her wbc fell down to 1.3 and her ANC was 471. She had been holding them up since we stopped her injections this summer. In fact, August 23rd they were 1.9 and 1045 - really good for Shelby. So this big drop had us concerned. When your ANC is below 500 you are considered severely neutropenic and at high risk for infection. We kept her home all week. Many phone calls were made to the Hepatologist who passed it over to the Hematologist. We were very unhappy with the way Hematology dealt with us. They said Shelby could go back to school without even looking at the correct labs! What a frustrating week of trying to get some answers. Scott and I are seriously considering seeking a 2nd opinion in Shelby's care because we feel like we are put on the back burner often with our concerns about Shelby. I vented quite a bit of frustration on the Hepatology nurse late Friday afternoon. It was decided that our Pediatrician would put in an order for Shelby to have labs Saturday morning just to see if things changed. They did. Her wbc went up to 1.9 and her ANC to 665. Enough to get her out of the house without a mask and back to school. Early Monday evening I got a call from Shelby's Hepatologist saying that she was recommending to the surgeon that Shelby have a Distal Splenorenal Shunt. She said we are going into our 3rd winter dealing with her numbers being bad so its time to do something. Something big. Now, we meet with the surgeon this Tuesday and he could say "No way. I don't think this is a good idea/she's not a good candidate" or he could agree with her fully. Either way, we will probably get a second opinion just to make sure this is the right path to take because this is major surgery. She would be in the hospital for a week and then home for a couple more recovering. It is so much to think about right now. We just want to do what's best for her. We would appreciate prayers that Scott and I will be able to see clearly and know the correct path to take. Thank you.

Saturday, September 04, 2010

Jenn's Bad Day

Thursday is a day I never want to repeat. I had skin prick allergy testing done because my allergies are quite bad. It has been 6 years since I was tested and I was pretty sure that I had developed new ones since then. I reacted quite quickly to the test and was given Zyrtec in the doctor's office for the itching. As you can see below, my forearms were not a pretty sight.

I left the allergist's office
and ran to the bank. Still feeling fine (but itchy) I headed home from there. All of a sudden, while driving, I felt very flush and faint and my heart started pounding HARD - like it was going to jump out of my chest. Instantly I was frightened, but knew that I had to get somewhere and get some help. I didn't want to pull off on a side street, pass out and have no one find me so I made it to a Culver's. I had the presence of mind to grab my wallet (in case I passed out I could be identified) and my phone. I locked the van and went in and asked the manager to call me an ambulance. I explained that I just had allergy testing done and was driving home and all of a sudden felt awful. I managed to hit the send button on my phone and have the guy at Culver's explain to my Mom what was happening. The ambulance came and took me to Rockford Memorial. My heart rate was in the 180's and I remember them saying that my blood pressure was 180/100-something. Not good. In the ER I was given a bolus of fluid and Benadry, a steriod and Ativan in my IV. I was hooked up to heart monitors and s-l-o-w-l-y began to feel better. From the labs they drew it was determined that my potassium was low and that, in itself, can cause wacky things with your heart. The ER nurse came and gave me 2 potassium pills to take, but after a while the doctor came back and said that they had been watching my heart monitors and that my heart rate kept jumping up then going back down. They said I needed to stay overnight to get an IV potassium infusion and to be monitored. Lovely. By now my arms looked like this.

My night went fine. Not much sleep was had as I was scheduled to have vitals every 4 hours and then at 5 a.m. they drew labs and did an EKG. A few hours later I had an Echo and a chest x-ray. Everything looked good with my heart and my potassium level was in the normal range so I was discharged around 1:30.

Thursday I follow-up with my regular doctor. Who knows why my potassium level was so low. When I was sick a few weeks ago it was normal. My "official" diagnosis upon discharge was tachychardia brought on by hypokalemia (low potassium) and allergic reaction.