Day 2

My second day was interesting…. Towards the end of day 1 started bleeding… I had a catheter in and when I stood up there was blood…. This was the first and only time I have called the nurse..I try so hard not to a pain to the nurses… but I didn’t know if my incision opened or something happened with the catheter…she came in and looked at me and said ok I have good news and I have bad news…it’s not your incision and it’s not th catheter… this happens to a lot of patients when they get a new kidney… your body resets… let me guess you weren’t having regular periods before right..?  Yup couple times a year… ok well those days are over.. and it started TODAY… OMG so now I had to wear these ugly short shorts and and a hospital mattress pad… lovely.. so I’m embarrassed and humiliated but I figured hey it’s a good sign.  Then day 2 came… I woke up feeling sick from the medications but now I have a new fun treat… violent diarrhea.. you know what is hard after surgery.. bending and sitting and running to the bathroom when you are connected to wires…AND THEN getting there barely in time and you can’t get these stupid short shorts down in time and blow it EVERYWHERE…  think the Hall Pass scene… 

but it goes everywhere instead because the pad is stuck and you didn’t grab it in time… to say I wanted to cry is not even close to the word …remember how I said I don’t like being a pain for the nurses.. well in my humiliation I decided to clean the bathroom the best I could myself… think walls, floor, commode, toilet… I was more upset they don’t keep cleaning supplies in the bathroom..  so it was wipes and soap and water… I was pretty proud of myself for how clean I got it considering I could barely move or bend and somehow managed.  The next chance I had I mentioned it to the nurse and she was shocked that I did that… diarrhea another side effect to this medication… I would run to the bathroom so frequently and i was only having a liquid diet anyways so this meant no food… what a great start… eventually around day 3 I was out in solid food but the diarrhea continued for almost 3 weeks.  They also started me on infusions daily.. I had phosphorus and iron and magnesium and potassium all those numbers were low so we needed to boost this numbers.  So many infusions… so glad for the picc line!

A few weeks before the surgery we had a meeting with the nephrologist… in my life things rarely go the way they should so I was literally waiting for the next shoe to drop…I can always sense it coming….the moment we were in the room with him I could feel something was wrong… eventually he said ok so we have a small situation… as you know your husband wasn’t a match due to antibodies and the new donor is a match because he has small amount of antibodies…  now years ago we wouldn’t be able to see things and the degree of the antibodies.. however now we see degrees and we can see that he has some antibodies that may lead to issues later in your life… so we have had meetings  and discussions with the transplant board and it’s basically 50% so the decision is up to you.  You can cancel the surgery and wait or we can go ahead but monitor you much more closely we will run tests to monitor the situation we may need to do plasmaferesis at some point.. and while in the hospital we are going to dose you with some ATG as well.  So I looked at my husband and he looked at me… and the doctor said ok while I’m here you 2 discuss it… married almost 25 years we really know each other very well… I said to him ok what’s your though he said I think we take the chance you will be monitored and science is advancing so in 10-15 years time alot of things can change…. I laughed… and said exactly my thoughts… the doctor kind of laughed and said wow you two are on the same page huh?  Yup decision made we will go ahead with it.  So on day 2 they started the ATG infusions… to say they made me feel sick would be an understatement… the first one I just felt off but then I was getting it daily and they eventually had to slow it down it was making me sick going through too fast… I had those infusions daily right till the day I left.. it gave me the shakes so bad I would sit there and just shake for the infusion and pray I wasn’t gonna throw up.

 

I spent another good 8-10 hours sitting in the chair and walking  around my room… not really one to walk the unit… but I would do laps in my room… and no not just to the bathroom and back lol!

This was more difficult because of the amount of weight I was putting on from the swelling in my legs and hands and feet…I took out my hair from the braids and I looked like a crazy wild lady lol then I braided them back again after my sponge bath… nothing feels better than feeling clean and having a sponge bath.. I had an amazing nurse who helped me I was so grateful to her… I just felt so disgusting so to change and wash up was a real treat for me.  Beside the not feeling so great the hardest part of being I the hospital was the loneliness… I would call my husband to FaceTime with him but he would be napping or just not be in the mood to chat so it was weird for me… eventually I got Netflix running on my iPad and would watch some mindless tv…but it was more to drown out the other patients who would scream in pain all day and night and swear at the nurses… I felt so bad for the nurses in the unit they were really being abused…  another reason I went out of my way to be kind and patient… a patient patient..

My poor hubby looks so swollen and sore… he will always be my hero!