It's a good thing Karly dances through the rain so well!

We saw her Advanced Heart Failure doctor on April 4.  The doctor said that when she starts to think about adjusting Karly's medications, then you know you are doing well. It was decided to switch from 18 blood pressure pills a day to 1 pill once a day if her creatinine level was below 2 on Monday, April 7. We were looking forward to this.

Around 3:00am Monday morning, Karly woke up with her face and hands swollen and itching body wide. She took some Benadryl and was able to sleep for a few hours. Around 7:00am, I woke her up to see that she was still swollen. We went to the Day Hospital around 8:00am for her IVIG. Upon seeing Karly, the doctor was called. Since we did not know what was causing this problem, the IVIG was suspended until we could figure it out. She had a chest x-ray to check why she had pain when breathing in. The chest x-ray looked good. She had an ECHO which was unchanged from previously. The Allergy Team came by several times that day. The good news Monday was that her creatinine was 1.48. The bad news was that the kidney team wouldn't let her take an ACE inhibitor as it creates a problem for the kidneys since she needs IVIG every 3-4 weeks. This combination would be bad for Karly. Finally around 6:30pm with the swelling down, the IVIG was given. Allergy decided to withhold the BP meds that day which had been the last thing she took before the swelling occurred. On Tuesday, they challenged her with one of the BP meds., and it went fine. At that point, we switched that BP med from 9 pills a day(3 pills 3 times a day) to 2 pills once a day. This has been a happy move. The other BP med was discontinued until further determination of its allergy potential to her. This was okay with us also(lost 9 pills there). Karly's BP remains good even with one less drug. She still has a drop in her BP about 2Xweek where it goes too low...this week it dropped to 63/35. We haven't figured this out yet. She now has to take Lasix once a day which may have been part of the reason she was swollen on Monday. This in turn makes her potassium too low, so she takes potassium once a day with weekly blood draws to check all her electrolytes and creatinine. It is quite an array of drugs on a daily basis. She remarkably keeps it 'all happening'.

She had to drop her Physical Therapy Assisting class which is sad. She is trying very hard to complete the Sociology class. She is one hard-working girl. Despite all her challenges, God is using her story and experiences in life to speak with people. We find God's grace and mercy throughout our story. We love that He uses all our(yours too) circumstances to bring people closer to Him. He is Almighty! While her current situation is stable, she is not. Her renal artery balloons are temporary and her heart function has not increased. We do not know what God's plan is, but if she is to have a bone marrow transplant, her heart function must increase and the kidney function needs to remain the same or get better. We are following the path God sets before us. Pray for us to keep our eyes on HIM and go where the light leads.
Love,
Mom