Today has been a really stressful day trying to figure out what to do with my health situation. They have all been calling me (my home infusion company and Pittsburgh) all morning with concerns. It's just a really long and complicated story. But if you follow me at all, you know that one reason why I have been slow to call Pittsburgh recently is because it is hard for me to handle it when the best intestinal transplant team in the world asks ME what to do because they just don't know.
Today I started crying on the phone when, after I told my transplant coordinator that I am still so sick, not tolerating tube feeds, my electrolytes are so unstable, and my energy is so low, she said "I just don't know what they (Costa or Kareem) can do." I heard exactly what I feared I would hear...I just didn't expect to hear it today before I even got up there...
Anyway, she is working on arranging a visit in April where I will see either Costa or Kareem. She also wants their new transplant surgeon to sit in on my consult to see if maybe he will have a fresh idea that could help me that Costa and Kareem may not have thought about. They'll do a biopsy to look for rejection since it's been a while. I am also due for my annual bone density scan and appointment with my osteoporosis doctor. So, I will be there at least a few days to get all of that in. I am scheduled to see genetic at Children's Hospital of Pittsburgh again in June to continue to look into genetic conditions, but I can't wait that long to see transplant and deal with the GI and nutritional issues.
On top of that I told her that, in my opinion, I think it is time to have a pair of fresh eyes from a GI doctor who knows more about GP, CIP, DS, and the newly suspected achalasia than my doctor at HMC does to take a look at the situation and see if he has any fresh insight. She agreed that it is at least an option and is setting me up with a GI doctor there whom everyone loves. Although he deals primarily with Crohn's patients, she feels like he would also be fairly knowledgeable about all of my issues too and if I wanted to see him, she'd set something up. I don't know if he will have any new ideas, but I just want to pursue any options I can before I decide that going back on TPN really is the only way I have left to go.
My potassium has been running low for my last three blood draws, so my home infusion company is working on contacting my PCP to see if I need more potassium in my daily IV infusions. Unfortunately, this would mean an additional two hours hooked up to my IV pump (from 12 to 14 hours) on top of being hooked up to my tube feeds 24 hours a day. It's ok in the sense that I am home in bed 14 hours a day anyway so it won't affect me in terms of limiting what I already do outside of my home (I am not strong enough to carry around two pumps and two bags of formula/fluids outside of the home. The biggest issue is that due to the long period of time the potassium will infuse, I will need an additional dose of IV Benadryl halfway through in order to prevent a reaction and I am already so tired from the one dose I get every day that I am not interested in adding another dose to that.
I guess the GOOD news of the day is I did hear from the Office of Independent Living Opportunities in York and they are coming out on Friday afternoon to take the next steps towards me getting an aid to help me out at home. This step is the one where we will discuss my needs, determine how many hours of help I will need per week, and what types of services will be most beneficial. This is a step in the right direction and hopefully I will finally have that assistance very soon. This will help me out a lot by reducing my feelings that I am a burden on my parents. They have NEVER EVER EVER made me feel that way and would do anything for me I know, but I also know that my limitations do add extra work for them and the aid will help me feel like I am less burdensome on them which will reduce my stress and some of the frustrations I have with not being able to care for myself more. They are also happy that this person will be able to help me out and that it will relieve them of some things for them too. I am also hopeful that she will be able to help me stay more organized with G-PACT and be able to be more efficient there. My parents will probably feel safer when traveling knowing that someone is coming in several times a week to help me with basic needs like changing my bed, doing my laundry, helping me shower, keeping my place more sterile, run some errands if I am too low on energy to drive, etc. So in all this mess of the day, that is one encouraging thing.
I am mentally, physically, and emotionally exhausted so I am going to rest now and try to get some sleep. Thank you so much for all the prayers. I know so many have been lifting me up because in spite of it all, I really am in pretty good spirits most of the time and still fighting to maintain as much activity as possible and not let this take over my life.