I had an incidental finding of a tumor back on September 9th. I was in the hospital having a ct scan done for cellulitis of the stomach and belly button. When they came to me with the findings they told me I had a large mass on my right kidney.
My first thought “Oh, shit.” I mmediately I went to my primary care dr, then a few days later to a nephrologis t, who then sent me immediately to urologist. Urologist number 1 was ready to do my surgery, then his hospital refused to do it. I’m a large woman, and they said they didn’t have the equipment to operate on me. Bull shit, as they have operated on me in the past, at a higher weight, as well as on my father who is a large man. My doctor is new to the area, not that far out of residency so they just were pushing him around. So, no problem, let’s try Johns Hopkins. That doctor was an asshole, prior to seeing me he had set what he wanted to do, cryoablatio n, Which, in a small tumor is acceptable. Mine was already well above the 4cm mark and not a candidate for that. Hi s statement “I had ONE patient who was larger, who I did an open nephrectomy on. He had a very hard time, spent a long time in rehab, it was very hard on him. He was much older than you but, it was hard.” O k, one patient my size, who was much older and you’re going to risk my life? I don’t think so.
We left Baltimore, drove to my original urologist (a several hour drive) and he got his surgery coordinator, Terri, on the case. He decided contacting his alma mater, and where he had his residency, was our next step. Now, by this point we are well toward the end of October, and I am obviously scared. We get into the next Dr. And, his junior surgeon was worried that the Attending/Senior surgeon would say no. His words to us were “Someone in academic medicine will do this surgery, if we won’t, these places might” And he listed a couple. Then we met his Sr. This Dr, let’s call him Dr. G, had a very thick accent, but, was understandable. He immediately agreed to do the surgery, although he was completely upfront with me on the risks. As was the junior when we went through step by step what would happen. In fact they warned me that if I did not get out of bed as soon as possible after the surgery I would die. Yeah, scare me to death.
So, now we’re into November, they set my surgery date for December 1, my preop appointment 3/4s into November. They checked me in the night before surgery for some other things. On December 1st, I woke up terrified with my husband in the room with me. My Mom showed up as they were moving me to preop. And, from there things begin to fly.
The nurses in preop were great as was the surgical team. The anesthesiologist was not, he was mean and harsh, and did a whole lot of work on intubating me, while I was awake, through my nose. This included ramming tubes into my nose, until I would scream from the pain, then pulling it out, trying again, and remarking that my nose was too small. This went on for quite some time. Unfortunately they gave me just enough versad to make me lose control of my reactions to pain but, not enough for me to be out of it. Now, I have had surgeries in the past, the most recent 13 months prior to this. They have never had a problem intubating me. This anesthesiologist saw fat and was automatically prejudiced against me.
Unfortunately, I am now 13 days out from surgery and my nose is still very painful and I am having bleeding on and off from it. That can be dealt with later though. Ok, so the surgery was the first, and only, scheduled for my surgery team as they knew it would be a long time to do my surgery. Well, it took them 1 hour and 45 minutes to get me positioned and prepped and decide their final incision but, the surgery itself only took just over 2 hours. Which is amazing for a full open radical nephrectomy on a large person. They did an incision not traditionally done for a nephrectomy and went in at the midline. My incision is from just under my breast bone, slightly to the left, down into my bellybutton. I have a long torso and it is a long incision.
The continuatio
n of my story: The day after surgery PT never came in so I was in bed with the leg pumpers on. (I know the proper term but, I hate those things.)
Day 2, PT got me into a chair, my nurse pulled my catheter, PT left. AND NEVER CAME BACK. So, I got myself up with my friendly IV pole and learned how to walk to the bathroom, use the toilet, and come back with that incision.
Day 3 PT comes in, again, to have me walk as far as I would have to in my house, then left, I never did see them again. I pushed myself to do the walking, the moving, as I wanted no blood clots or problems with healing.
Day 3 evening my drs mention going home in a day or so. I freak, as originally I was told a minimum of 2 weeks in the hospital. I am doing so well, that I won’t need it.
Day 4, they say I can go home but, I ask for one more night for my piece of mind as they were transitioning me from the PCA to oral pain meds. They have no problem with this, and get me onto oral meds that kill the pain. Since I had been on Vicodin long term for other pain, I needed a higher dose and they were completely understanding. Drs that treat your pain rock.
Day 5, home again, home again. A 2 hour bumpy drive but, man is coming home sweet.
Other things: All my nurses except one were fantastic. They treated me great, kept me up on the pain boluses with no issues, made sure I had ice chips, as long as I was npo (which was awhile.) Only 1 nurse upset me. She refused to bolus pain meds, kind of ignored me, and was just bristly. And, of course, she was the one orienting a new nurse. The new nurse I hope will be much more compassionate.
The dietary staff when I was finally allowed to have liquids and then food, were nice. They obviously have no idea of how to feed someone with type 2 diabetes and set me one plate with food I was allergic to on it but, they were still nice about it and made sure I had soup to replace it.
PT, nonexistent and neither my doctors nor I were happy about it. Had I not been as tough a person or as strong as I made myself be things could’ve been very bad in that manner. I do plan on writing that department head next week.
My doctors were fantastic. 2 of them were friends with my original urologist but, I don’t think that had anything to do with my treatment. The attending I didn’t see much but the other doctors I saw at least twice a day and they were very encouraging.
Today, I saw my original urologist to get every other staple removed, and to get the pathology, Stage T1b. So, big tumor but, encapsulated and not into the ureter. Great news in a battle that has been anything but great.
This was originally written very soon after my surgery. I was much nicer about the nursing staff than I should have been as I had some issues with the nurses here. Luckily the hospital I go to for my other care has much happier nurses.