BP has been very bad the past three days, going as high as 190 systolic and 118 diastolic. She is already on five different BP medicines (Clonindine, Hydralazine, Enalapril, Metoprolol & Amlodipine) and three of those are at the highest recommended daily dose. Yesterday, they gave her one extra dose of Clonindine to knock it back down. We're not sure if something else has come in to play here or are we still trying to find the proper level and mix of meds. One thing the doctors and the nurses all agree on is that she is taking an incredible amount of meds, especially for someone that is only 21 years old. We always assumed that BP would level off as we got the blood issues under control, but that has not been the case at all. We're also concerned about how long she will have to continue taking all these meds and what their long term effects will be on her.
Alyssa's quality of life has really taken a beating. By the time she gets done with dialysis treatments, she is so tired that she'll often sleep for the balance of the day. She has also experienced a great deal of nausea, so she seldom wants to eat anything, which drains her energy level... so around and around the merry-go-round we go. She has already lost 25+ pounds and just can't afford to lose much more. At this point, her nutritionist and doctors want her to eat anything, whether it's on her renal diet or not. We made a big hit with a homemade root beer float last night, so I guess that we will have to continue to look for what appeals to her.
Still no kidney function. She had her physical at 7:00 AM this morning (I forgot what it's like to get up this early) and was cleared for peritoneal surgery next week. They will need to give her a special blood clotting drug and will control her blood pressure through an IV drip. She is nervous about the surgery, but very excited about being able to do her dialysis at home while she sleeps.
Good News
Her MRI taken last week, came back clean. Almost all the damage done as a result of her seizures in February has been reversed. Great, great news!
Also, her blood labs have stayed within targeted levels now for about a week, so Dr Kouides has stopped, for now, her plasmapheresis treatments. We're very hopeful that eliminating these three times per week treatments will help Alyssa gain some much needed energy. She will have blood drawn two times per week to ensure that she stays within her target numbers.
She did shed a few tears on the way home after her final treatment Monday. She has become very attached to her Red Cross nurses that have been with us constantly since this all started back on January 14. As we stated in prior blogs. Alyssa's blood disorder was 98% fatal before apheresis was developed so we certainly are thankful for this life saving process. We also cannot thank the Red Cross nurses enough for the care, compassion, guidance and friendship they provided in addition to this essential treatment. They will always be part of our "extended" family.
Alyssa is still a very sick young lady, but we are going to celebrate every "victory" that she achieves and continue to look forward to a brighter future for her.
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