good times

The master plan

Marilyn Clark1 Comment

I am the queen of the “stay tuned” post with no follow up. Of course maintaining 2 blogs, 3 Instagram accounts, 2 twitter accounts and Facebook may have something to do with it. I forget where I have made my updates. 

I feel like I have pulled myself together a bit. My consult in San Francisco definitely put my mind at ease to a certain extent. I loved the surgeon and her staff, I got my two pages of questions answered and I got scheduled for surgery. It’s next week. Yikes. 

Fun fact. I have beautiful kidneys. The surgeon pulled up my CT scan and walked us through the slices to show me where the mass was located. It’s on the top front of my right kidney. That’s when she remarked I had beautiful kidneys. It does not appear that the mass has gone into any of the collection systems of the kidney so it looks like it can be removed cleanly without impacting kidney function. Good news. 

They won’t be able to confirm Stage and grade until after surgery. At this point she says it’s a 75% chance it is clear cell renal cell carcinoma. There are a few other type of RCC and a few non-malignant things it could be but she feels pretty sure of what she will find. Hopefully the pathology comes back quickly. 

The plan is that she will do the surgery with the Da Vinci robot which will be minimally invasive and a faster healing time. I should be in the hospital for 2-3 days. However, since I have a history of adhesions from my 2 prior abdominal surgeries, there is a chance it may be an open surgery. I won’t know for sure until I wake up. Yikes. 

Knowing I will be at UCSF is a relief. That place just inspires confidence. And the services they offer are amazing. The consult I had with the oncology nutrition department was really interesting. That’s just a free service they provide that will be available to me now that I am a patient. The good news is I don’t have to change much. I eat really well in general and I have started the shift towards plant based. The dietician basically said she didn’t have a lot of suggestions of things to change and that I would be in great shape for recovery. She did offer a few suggestions. 

  • Go whole food plant based. So not necessarily 100% vegan, but reduce the amount of animal products and focus on non-processed whole food fruits and veggies and grains to the extent I can with the Bariatric diet. ✅
  • Reduce sodium. They recommend this for all their cancer patients but controlling blood pressure is important with compromised kidneys. My hope is I don’t lose any function with a partial nephrectomy, but I do have to take good care of them. I never ever ever want to be on dialysis.  My blood pressure pretty much runs low and with the lack of most processed food in my diet, I should be good. ✅
  • Add pre-biotic food and lots of veggies for probiotics. Gut health is still kind of a mystery to me too. Must do more research. She recommended additional flax seeds to my protein ✅ and adding food with live active cultures like fermented foods and yogurt. So kim chi, sauerkraut, kefir, yogurt, etc. And eat more cruciferous vegetables to the extent I can with my protein first rules and tiny tummy. ✅ She also recommended a probiotic called VSL#3. Need to research. May add that down the line. 
  • Keep the protein supplements going and stay at the high side of the 60-80 gram Bariatric requirement. ✅

It’s comforting to know I don’t have to change much and since it’s anticipated that surgery and removing the mass will be the cure for me with no follow-up treatment, life should continue as normal after I recover. They will follow me for 5 years which is typically the timeframe for recurrence. There’s a 5% recurrence rate based on what the surgeon told me — much better than the 80% I’ve read from the National Kidney Cancer association. Stupid Google. 

So it’s all good. I just want to put this surgery behind me. It’s going to be a long recovery. So I’m putting together my Netflix and Hulu playlists and nesting in the house. The worst of it will be over in a few weeks. 

Thursday we get to go down to SF for all of my pre-surgery tests and meeting with the anesthesia team. Those peeps need to be my friends. So another crack of dawn drive to the beautiful bay is in store in a couple days. Have I mentioned how amazing my husband is?

So there you go. Now I am off to make lists. 

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Some serious scratch

Marilyn ClarkLeave a comment

Anyone want to guess what my little adventure cost me a few weeks ago?

Surgery and hospital stay was $31K — all covered by insurance.

Ambulance $4,114 — none of it covered by insurance, unless the ambulance company provides them with my patient transfer report.  They better do that.  Sounds like I need to give my insurance company a call.  Should be covered from one hospital to another, especially since I was all doped up on morphine at the time.

Ugh.

It’s complicated

Marilyn Clark2 Comments

There are numerous Facebook “support” groups for weight loss surgery patients and they are full of people who have been given no rules, who are asking when they get to eat pizza again, and who are clearly not appreciating the benefits of surgery having gone through dramatic altering of their digestive system. You usually hear about these people ending up in the ER with dehydration or damage to their new delicate pouches or sleeves. I have had such smooth sailing in my recovery, I resolved myself to believe Rule Followers don’t get complications. 

But I changed my mind on that. 

One week ago from today I found myself in the ER doubled over with severe intestinal pain that started the day before. I couldn’t eat, I couldn’t drink — I knew something was wrong. I called my surgeon (note: call your surgeon, don’t consult Dr. Google) and she had me take my leftover pain meds overnight, but said I should go to the ER if it got worse. I spoke with her several times in the morning and decided the ER was my best bet. I went into the ER where they did blood tests and I got a bit of judginess from one of the nurses about “being talked into that procedure.”  I had heard stories of bias against weight loss surgery patients in the ER so I was dreading going in. I was seen really quickly, put on IV fluids and major pain meds. MAJOR. I had to do a contrast CT scan which required me to drink some nasty stuff over the course of 2-3 hours before they could do the tests. Morphine was wearing off in 2 hours so they bumped me up to dilaudid. It was crazy pain. 

About 6 hours later…a few hours after the CT scan, some nurse I hasn’t seen asked me if the surgeon had been in to see me. I was like “SURGEON???? WTF?”

My original nurse, Joaquin, who I thought was going to be a dick, turned out to be my biggest advocate. No one had come to tell me what was going on so he told me the CT scan revealed an internal hernia and twisting of intestines. They were trying to find a surgeon and I told him I only wanted my surgeon. He took all of her contact info and gave it to the ER docs and it took them another hour to figure it out, but my surgeon had them arrange for an ambulance to take me to her hospital for surgery. The general surgeon came in to talks to me in the ER and said he had done ONE gastric bypass in residency 10 years ago so they were happy to send me to her. I was pretty freaked out at this point but the pain meds were definitely taking the edge off. 

I got to the other hospital after a 40 minute ride with possibly the dumbest ambulance guy and was put in a room on the floor where they take care of bariatric patients. People who understand what was going on. My surgeon came to see me within the hour to tell me what she saw on the scan and told me I get a gold star for being her first patient to get one of these so early in my recovery. There were two cases in the ER before me, so my surgery was going to be at midnight. I was so out of it and in pain and thirsty  and going on 2 days of not eating I didn’t care. 

So out of surgery at 2:00 am Saturday, I find out I had a tiny piece of scar tissue that caused the spiraling of my intestines and all she needed to do was snip that and everything unraveled (hence the name of this blog). She explained that I had lost so much internal fat leaving spaces in the area where she did the bypass which allowed things to move around. She said she put in several permanent stitches to hold everything in place and I should be good to go. I could immediately tell that the pain I had been feeling was gone. Now I just had surgery pain. And I had to start over with my food progression. Liquids for a few days, then onto purées and then solids as tolerated. Still working on getting past puréed food a week later. 

I had to stay over night and had to meet all of the requirements to leave. 

  • Walking laps around the floor
  • Breathing exercises 10 x an hour (the anesthesia was a bitch and I still feel like I am catching my breath)
  • Drinking progressively more for several hours, 30 ml, 60, 90, 120. It’s hard to do but I wanted to go home. 

The nurses were awesome. I made sure to be extra nice and self sufficient so I could be their favorite patient. I even saw one of my favorite nurses from my surgery back in July. I’ve lost about 35 pounds so far and they were all so encouraging about how well I am doing. 

Anyhow…took the week off to recover and it is so much easier and faster than the original surgery. I’ve been doing some work from home so I know I will be ready to get back. 

So, I am a rule follower who had a fairly rare complication early on and I consider myself very lucky. 

Knocking on wood this is the last of it.