04/19/2022
Ok, I am trying to type up this update for the 150 billionth trillionth time, I apparently don’t know how to work my laptop. I have somehow typed this up repeatedly get it almost finished and somehow I end up telling my laptop using the keyboard to back up which leaves the page and deletes everything I just typed up! So frustrating.
I had the craziest week last week. Monday, the 17th, I actually finished my run time from start to finish. I had arm pain in my fistula arm from my needles up my arm into my shoulder. The technician putting in my needles for dialysis also ended up hearing a whistling in my fistula. The pain in my arm during dialysis can mean that I have a narrowing in my veins. The whistling can also be a narrowing or it could mean a partial blockage, like a clot,so as the blood passes it, it creates a whistle sound. Thankfully I already had a fistulagram done to check and make sure that all is working well on Tuesday.
Tuesday, I had the fistulagram. They found two narrowings and ballooned them out. They did have a hard time basically stretching the vein out and increasing the blood flow back to what it was prior to the narrowing happening. They increased the blood flow but it wasn’t what it was prior, it just was better. During the procedure they gave me heparin to keep me from clotting, so after the procedure they gave me a medication that starts with “P” that I cannot seem to remember the name of it for the life of me. I have it written down somewhere and if I was near my boyfriend he would remember it in an instant. ANYWAYS… they give me the medication and I get side effects that could be a reaction of some sort. My heart felt like it slowed down and then was racing at the same time. Also my breathing became very hard and my chest hurt. So the Doctor had me stay until everything subsided and made sure I was ok. When I left I had to promise to return to the ER if the symptoms returned. So I went home, ate food and went to sleep and of course I wake up and the symptoms are back, off to the ER I go. Turns out these symptoms are common side effects of this medication. So next time I need to let the staff know I have these reactions to this medication because I will remember the medication when I hear it again. So not an allergic reaction to the medication, just a lot of side effects.
Wednesday, I went to dialysis. This was the first dialysis since my fistulagram the day before. It did not go well. I had more pain in my arm from my dialysis site to my shoulder than I did prior to having the procedure. I just chalked it up to them having the difficulty of ballooning out the narrowings that they basically had to over stretch it to get it to increase the blood flow. So some Benadryl along with some monitoring to make sure that it was not an allergic reaction then sent home.
Thursday, I had a CT scan of my lungs to try and figure out what the heck is going on with my breathing issue. I mean it has been since November that I have been dealing with this, so before covid. One of the reasons I was constantly checked for it from then til diagnosed with it in January. This day was more mentally draining. One of my best friends took me to my scan, so she stayed and visited and we had coffee… it was great. That is until my son’s school called because he was throwing a fit about having to go outside for recess. For whatever reason he wanted inside recess. And he had a full on meltdown and completely refused to do what the staff was asking and telling him he needed to d0, so he got to come home and be in trouble.
Friday, I felt great actually. Kiddo was home with me for Good Friday so he helped me clean up our home. He cleaned his room and his bathroom by himself as well as hung up and put away his clothes that needed to be. He then continued to help me with laundry and dishes and cleaning up the trash. All in all it was a great day. I was so excited. I didn’t do dialysis today because they did not have an opening late enough in the day that would work for what we had going on so I switched it to Saturday.
Saturday, I woke up in agony, I was not able to move very well due to pain. Now I expected pain due to the cleaning and physical activity I was doing Friday (example dancing like an idiot). So I took the morning easy, made breakfast pizza, threw up said pizza after like half a bite, and went to dialysis. Thankfully I took it easy, by the time I got to dialysis my pain was so much better. On dialysis however, things changed. Even though I threw up and had the pain I actually felt fine, after throwing up even better. Awesome today is going to be good… only it wasn’t. At dialysis I am nauseated as ever, dry heaving but cannot throw anything up at all. My arm is hurting from my needles up into my shoulder again… and… AND my arm has gone numb and tingles. Had issues with my top needle, my venous need since the beginning and now the site itself is hurting along with the pain up into my shoulder. Then as if that isn’t enough my stomach starts hurting right underneath my breast bone. Itr all became too much and I ended up getting off an hour early… well over an hour. Go home from dialysis and the original plan was to go get Starbucks (a little insight on me is I LOVE Starbucks and I don’t turn it down) Yet I turned down Starbucks. I just wanted to be home and sleep. I wasn’t even hungry… I am always starving after a treatment and I wanted nothing. My boyfriend and I went home and he made some food. I ate a little bit but not like I normally do after dialysis. My boyfriend worries about me A LOT and it’s so sweet. Sorry off topic kinda. Go home, eat, and crawl into bed. At one point I wake up and ask what time it was and my boyfriend responds with 2 something and I like freaked out that I was late for dialysis and that I missed the call asking if I was okay and coming in. Only I didn’t freak out, I asked the time and rolled over and was back asleep before my head hit the pillow. Wake up a little after that happens and run… RUN to the bathroom and while doing some business on the Porcelain Goddess I begin throwing up again. My son is at Grandma’s and I am throwing up and cannot stay awake.
Sunday, I wake up feeling alright. Have breakfast and coffee and start cleaning up the house and doing laundry only to be taken down by my pain under my breast bone. It's a freaking cramp and it has me doubled over whimpering in pain not able to breathe. I get helped to the bed and just lay there curled up in the fetal position wanting to cry but can’t cause once I start I will be sobbing and that will just make the pain worse and I am nauseated so crying is not an option. I take a nausea med and a pain med and just lay in bed not moving, focusing on slow breaths. An hour and a half or so later I am still hurting and feel that if I move I am going to throw up. Since the medicine didn’t help I went to the ER. Get into the exam room and talk with the Doctor and they draw labs and within 10 minutes I am informed that I am staying in the hospital. My potassium is critically high and I need dialysis today, like now, not tomorrow. So they are kinda looking into my pain but their concern is the potassium.
Monday, my potassium didn’t move so I did another run. Had an ultrasound of my fistula because of the pain I am still having and the numbness that has started since the fistulagram almost a week ago. My nephrologist is pushing hard for a stomach emptying study to be done while I am in the hospital but due to the medications I have to do it outpatient cause I have to be off certain medications for a certain amount of time. Was supposed to have a gallbladder ultrasound and didn’t, I found out today that they aren’t going to do it because the past ones and my labs show there is nothing wrong with my gallbladder. Was a bit upset about this one because I wasn’t informed that I wasn’t having it. I kept being told that I was and then this morning one Doctor was talking that it was still happening and then the next thing I know is another Doctor is saying no it doesn’t need to be done. I brought up the possibility of it being my diaphragm and apparently that’s not it either. I told him about the drop in my O2 stats that keep randomly happening, which apparently isn’t a thing to be concerned about or at least he made it seem that way.
Today… Tuesday… I am currently still in the hospital. They have no idea what is causing my pain and are now trying to blame it on a small erosion in my stomach that was discovered during my endoscopy. I might get to go home and if I do I will be sent home with a new medication for my stomach for a week and to quote “let them know if it works because if it does that’s great and they will prescribe more” end quote. So basically they are now throwing medications at me to see what sticks and then diagnose me off the medication.
Oh and I found out today that Gastroparesis can cause pain like I am experiencing… like ummmmm I was informed that it cannot cause the symptoms I am having…. Did anybody else think that maybe that is why my kidney doctor is pushing so hard to get the gastro-emptying study done???? No?? Just me??? Ummmm okay them.
I, however, have rambled on for long enough about everything this last week and still currently in the hospital and am tired. My pain is creeping back upwards so I am going to find a comfortable position to lay down in and try to rest. If you have made it through to the end of my update *cough cough* novel *cough cough* Thanks for reading and joining me on this journey to get a transplant. Love you all and take care.
