August –Nope, September 2nd

DustyMark's Journey, Uncategorized

Where did August go?

It was lost in ERs, hospitals, sending our daughter off to college, trying to keep up with our two at home (so they don’t feel like orphans) and then more hospital/appointments.

We are at Dialysis again. Today it was the afternoon and so Mark was able to continue to sleep and even after he got up he sat down in his chair and went back to sleep. He got really hot in the night…and so I didn’t sleep well as I started to worry.

I started the day on the phone with doctors etc and was frustrated right away. Just overwhelmed, I think. I feel like I’m out on an iceburg and none of these medical people want to help. In fact, I feel like they pushed us out here. No one wants to feel like that when you are suppose to feel cared for. I was able to get ahold of our Medical Care person (I forget her name) and she was able to help me sort through it all and walk me through a few processes to help me move forward. It was a long phone call but worth it. Then we dashed off to GR.

Okay, back to the back story…where were we?

I think it was Sunday night the 15th of August. Mark seem to be feeling worse and worse as the weekend went on. He spoke at his Grandparents funeral up north with lack of color in his face. His cousins were at our house and he just couldn’t engage like he would have liked. They all got together at his sister’s house Saturday night but he just wasn’t up to it. Sunday evening Aly was getting senior photos down here at the house (I can’t believe we have another senior) and when I went into check on him he just didn’t look right. His face and eyes were telling me he was getting worse.

I asked him to call the Urologist office and call the on-call doctor and talk to him about what he was feeling. He was told to go get a blood panel done in the morning and follow up with his PCP (primary care physician) and so we did. However, you can’t just get in to see your PCP when you want, on your clock, so we took anyone that was available just so they could steer us to a specialist etc. We left the office and went home with no real direction. It was kind of a “well we will watch this for a little while and…” Mark received a phone call from Urology about 2pm to go to the ER. So we gathered our stuff (knowing it will be a long wait) and headed that way. We had to wait in the waiting room for a while before we were called and led to his bed…in the hallway. Everytime someone needed to bring something or someone down the hallway I had to uncross my legs and we just felt like we were in the way for almost 7 hours. They hooked him to an IV, asked a thousand questions…and then send another doctor to ask the same questions again. I notice this is a pattern at Spectrum. I also learned it is a “learning” hospital and I right away thought, “well that’s great, however, I prefer for us not to be part of a classroom and instead to be focused on by one team of doctors to get answers and solutions. But that is just not how it goes. They did blood draws as well and his kidney function had dropped significantly since Friday. We did get admitted to a room by 9pm and were told a doctor would come in to talk to us. I also learned at that time, as I listened to an overhead announcement, that they had visiting hours and did not allow overnight guests. The nurse told me I could stay til the doctor came but by 10:30pm I ended up leaving. No one ever came. I arrived around 7:30 the next morning and before noon a nephrologist came in to see us. (he referred to me later as the “pushy wife”). I’ll have to refer to my notes for the rest….its all a blur. I believe he was taken to get an ultra sound and a CT scan with a little dye. Yes, just checked my notes. CT scan of the chest. One of the PA’s from Urology showed me his pre-donor CT and his current one. That “mass” was big and so was his kidney!! Normal kidney is 10cm and a donors can get up to 12/12.5 but his was 16cm. During his scan a blood clot was found in his main vein. They put him on Heparin. They also said his stomach wall was very thick but did not explain why. They took him for another ultrasound to be sure he did not have clotting in his legs. An appointment was set up with IR for a 5:30pm biopsy of the lymhpnode mass. When he returned…he attempted to eat something with little sucess and then went to the bathroom and vomited on his way back to bed. That’s the night he had his “nazi” nurse. (Someone has gotten very mad at me in the pass for using the term “nazi”. If you don’t like it, you can read past it but don’t read into it. 🙂 ) She told me I had to have my mask on at all times (not one employee has said anything to me at all the whole time about masks once I was in the room). This nurse also questioned Mark’s pain level…and wanted to know if he really needed pain meds.

Mark had a really nice old man as a roommate…but he was hard of hearing and so everytime his techs or nurses came in…they yelled everything!! If Mark’s IVs didn’t need service, his did. If Mark’s nurses weren’t there, his were. It is NO place to get rest! Its also not a good place to get nurtrition or nutrition advice…or to get movement in (if you could move) I also noticed that the ER was busy but not “urgent” and like there were 10 staff members for every patient I saw come in. I also was noticing that most or a large amount of staff, look overweight. (Some of you are like “so-what?” and although I agree that doesn’t change their knowledge of caring for patients and medicine…it just is a reflection of our society and our lack of health. They are often seen in the hallways with soda, chips, muffins, candy etc. I know all of this…I’m not surprised but when you see it first hand you want to educate!! I’ll NOT speak on this again. It was an observation. Not all…just alot. Some EMT people severely overweight. How do they act fast in emergencies…or carry a stretcher up 4 stories to rescue? hhmmm..

My computer is about to crash…

Mark is sleeping and we are off to one more appointment after this. I hope you can get through it all with a little left at the end.

Also Joe Clement stopped by to talk to us about selling our house. Know that this is our thinking…I can explain more later…and if you know anyone in the market…let them know.

Mark slept through most of this session so I was able to get alot of phone calls in but not all of them. I will continue the “saga” later but wanted to get something out there because its seems many are reading. I didn’t plan to give so much “moment to moment” facts but as I look through my notes its probably good for me to review and type it out. I think I’ll be glad I did later.

Also I thought I resolved the imagine loading issue but I did not…so once again. A very boring blog. 🙂