We have two doctor's appointments this week on Wednesday and Thursday. On Wednesday we see the gastroenterologist. Nicole started taking Omperoloze which is the generic for Prevacid in August I believe for her stomach pain after she ate. It really did help until about 10 days ago or so. The pain has come back but it is different. For the last two Sundays Nicole has thrown up after eating. The first Sunday I thought it was because of a combination of things not drinking enough liquids as she should have, didn't eat hardly anything, started her monthly cycle. She complained of dizziness all day. After she ate dinner she went and laid down for a few minutes which she does every night. For someone with a lung disease it takes a lot of energy to eat. The chewing of the food takes energy and the digestion of the food takes energy. I think what happened is she laid down flat on the bed and got really dizzy which caused her to throw up. This past Sunday she said she wasn't dizzy but again she laid flat and threw up. I had to call CVS Caremark on Monday as we get Tyvaso through them and told the clinician about it and she told me to not have her lie flat anymore. Last night she didn't lie flat. I will definitely bring this up at her appointment tomorrow.
On Thursday, we head on a day trip up to the University of Florida at Shand's Heart and Lung Transplant Center to see her pulmonary hypertension specialist. We have to be there at 10:00 a.m. for her to do a 6MW (minute walk) which is a test that is used to judge how medication is working etc. We have our appointment downstairs at the clinic at 11:00 a.m. which will include a echo at least. We are usually at the hospital for at least 3 hours. I absolutely dislike this appointment very much. The doctor can tell us that the disease has progressed or something has changed with her heart or that she had to change medications such as going on IV meds. I pray and pray that this isn't the case. I also pray that something has gotten better but it doesn't. I will be grateful for stable I have to be because I don't want the alternative. It is a very draining day and this lasts for a couple of days afterwards. I pray that this will go well.
A trip like this takes a lot of work to plan as I must take what seems like half of our house. We will leave about 7:00 a.m. which means I will wake Nicole at 5:30 a.m. to take her stomach pill which must be taken 30 minutes before she eats. At 6:00 a.m. I will make her breakfast and get her out of bed. I will have to make sure we have a large jug of water and a partially frozen bottle of Gatorade to take with us. Her Tyvaso will be mixed and capped and ready to go in a cooler to make sure it doesn't get too warm sitting in the car. I will also have some snacks as it will be a long time between breakfast at 6:00 a.m. and we are able to eat lunch after her appointment. I need to take her medicine, her oxygen concentrator, a pillow and blanket along with her hoodie, things to do for all of us while we wait, also need her transport chair so she doesn't have to walk from parking garage (usually can't find a spot in the handicap parking section) and through the hospital. I also need all the batteries, cannula's etc., for her medication and her O2 machine. I also have to take my big old fat medical binder which I am going to try to work on getting into Evernote. I would ultimately like to purchase an Ipad so I can get all her records onto that so I can take that to appointments instead of binder/laptop but that is not something my finances allow right now. I have to make sure we have our phones and everything is fully charged. I know there's other things that we need to take but I am not thinking of them.
This is another day in the life...