Well today will be the 7th day and 8th night in the hospital. You must wonder if I’m going crazy. It has been hard but I’m coping well. Today I had a visit from the social worker and she had asked how I was doing. I did tell her the hardest part is that I miss my family terribly. I don’t really care about the time I’m missing and what I could be doing. I just miss being their for them. I know I need to be strong for them though and its exactly what keeps me going. I have there photo in front of me because I need to see them.
I’ve pushed myself daily to get out of bed and walk. I walk with the rest of the newly transplanted patients around the ward. I hope everyday that I run into the toddler I wrote before about but lately she’s been in her room. Her room is next to mine so I hear her playing and singing. I hope I have the opportunity to meet her. I so far have gotten kicked out of the cafeteria and the gift shop. I didn’t know I couldn’t be there but I guess being in gown, mask and having a cath sticking out of my neck could be pretty scary. Can’t help but laugh about it because they have no idea how scary it’s for me to be around people but I don’t let it stop me. As I said I have to keep pushing myself.
My family visits as much as they can. It’s challenging because my ward doesn’t allow kids. So I have to see them out in the lobby and we’ll walk around the hospital. Sometimes I even have the nurses hunting me down. My husband has stayed with me almost every night uncomfortably. All the hospital cots are taken up so when he does stay with me he’s sleeping in chairs. I’ve told him he didn’t have to stay every night and he actually went back to work since my stay been extended. When I first came in they said a couple days and then it turned into a week and now they tell me they can’t really tell me but possibly next week if all goes as planned.
As I mentioned in my previous blog its been complicating. Thankfully they were able to see that the infection is under control. They were able to compare all my earlier scans all the areas of concern are all old scar tissue. They were able to measure that there is a good amount of healing that is taking place. I’m glad the infectious disease department approached the situation with caution but I did have a feeling that the infection has run its course. The only part that raises their concern is my open wounds. However in the scans there is nothing that is indirect to the wounds that looks like active infections. As the docs have said before it will just take sometime. Until than they have to treat it as such. For me it’s just another thing I just have to wait on and be patient with.
The last couple days have been a blur. The treatments have been pretty harsh and I could feel it. I have had 4 plasmapheresis treatments and receiving the Amphotericin B infusions daily for the infection. Literally yesterday I told them I’m starting to feel dizzy and very tired. They were comfortable to cut down the infusions to 3 times a week. So I had a break yesterday and continued this morning with another treatment. When I walked today my legs have felt wobbly. I have no idea what this medicine is doing but I hope and pray that I won’t need it for much longer. I started another oral medication and they hope it will give me enough coverage so they can overall discontinue the infusion medication.
Tomorrow will be the last plasma pheresis and after I will finish with IVIG: Intravenous_immunoglobulin treatments to help support my autoimmune system. They decided to hold off on the ATG: Anti-thymocyte globulin. This kills off T-cells and they know it would be dangerous for me to do that since those are the cells that help fight infection. ATG is what they normally treat transplant rejection and was told that they could only treat you with this once in your transplants life. It’s another last resort medication. It seems all the treatments have been last resort but its working. They are also getting all the medications under control. Tapering the prednisone which caused my blood sugar to rise. I had to get needle pricks daily and some insulin but yesterday they discontinued this. Thankfully that is under control.
I just feel like this time is needed to get everything back in order. That’s at least how I see it. I know if I get through this I have a good chance of keeping my transplanted kidney for a long time. Just the fact that I’ve come this far shows some promise. The social worker told me to stay in this place. I know there is no point to waste energy on worry. I mean if it wasn’t to go this way its something that I’ll just have to accept either way.
I am constantly told that I’m going through this because God has a big plan for me. I’m sure He does but I honestly am okay if my plan is just being a mom and a wife. I definitely have a passion for change and a vision to continue to help others but I want to succeed in the main roles of being a mom and wife and I’m sure the rest would fall in place. I know God has instilled that humbly in my heart. I know no tear, pain, and experience won’t go wasted. Like my Pastor says, “Turn your pain into teaching.” It’s all I know to do and I think this is why I don’t suffer from post traumatic disorder as much because I have shared every step of the way. Plus I fight anxiety with pushing through any fears I may have. It takes a lot and I was already overcoming so much in the past month. This hospitalization may push me back a little bit but I won’t stop moving forward.