Mayo Clinic Conclusion (for now)

On Friday, my final day at the Mayo Clinic, I had an upper GI motility x-ray study.  This involved drinking barium (swallow/vomit/swallow/vomit) until enough barium was consumed.

I later met with the GI doc to go over the results.  The good news is that there are no blockages from scar tissue.  She did comment that my intestines loop in such a manner that it could explain some of the discomfort I experience – the bile and the discomfort when eating (food seems to sit like a rock just below chest bone for hours).  She wants me to return in a few weeks to consult with a surgeon regarding possible options to rearrange the loops.  Not looking forward to a 7 hour drive for a 1/2 hour consult and then another 7 hour drive.  Ugh.

Still nothing further on the esophageal sensitivity.  It was very frustrating and her only suggestion was to practice deep breathing when I felt nauseous or when the bile starts to build.  Her only recommendation for the bile was to continue sucking/chewing on TUMS as I have been doing.  In other words, keep doing what I am already doing.

Got home late Friday night.  Ended up with a monstrous headache on Saturday and basically took it easy all day.  Sunday the headache was still plaguing me but I did manage to do a little around the house.  I woke up this morning – no headache!  Still pretty fatigued but feeling more back to normal.

I meet with my primary care doc tomorrow to review the Mayo Clinic information.  Will discuss the possible need for a 2nd iron transfusion in a few weeks as well as the GI docs recommendation that I replace the PICC line with a Hickman for my TPN.

Emotionally, I am feeling a little letdown by the Mayo Clinic experience.  I was hoping for something a little more concrete.  The clinic is beautiful and the people very nice, but…

I am also back to trying to eat, even if only a few bites every 3-4 hours.  The GI doc felt it was important that I keep trying to process food through my intestinal track – even if just a small amount.

That’s it – my update.

Mayo Clinic – Day 3

Arrived at Mayo Clinic at 7:30 this morning and didn’t leave until almost 6pm.  Morning appointments were dull and nothing to report about.  At 10am headed up to Hematology to be put on stand-by to see one of the docs.  One of the docs reviewed my bloodwork and decided to see me (I only had to wait 15 minutes).  The concern is about my low hemoglobin and very low iron (practically none).  He thinks it is a result of the 2^nd surgery that removed some small intestine.  He suspects that I will need regular iron IV therapy.

He sent me down to the lab to run some additional blood work to see if any other minerals were low and to check some other areas of concern.  I then reported to the adjoining hospital and after a short wait, I spent 3 and a half hours receiving the iron transfusion.

Tomorrow will be another barium catscan and then I will meet with GI doc at 1pm for her conclusions based on the tests.  I anticipate starting the long drive home around 2:30pm.

Bonus for today was meeting an online friend (Rich).  He came down to Mayo and hung around for a few hours.  It was great to meet him – his father had stomach cancer and a total gastrectomy just a few months before my diagnosis and surgery.  He has been very supportive.

I probably won’t update again until Saturday – keep the positive thoughts coming.

Mayo Clinic – Day 2

I wish I had something definitive to report but, alas, I do not.  I arrived at 8am and, after a little wait, I was taken back to radiology (aka the torture chamber).  If you have never had a tube threaded down your nose into your upper intestine it will be hard for me to adequately describe it.  Imagine taking a straw that is about two feet long and shoving it up your nose,  After you pass the sensitive nasal passages the straw threads down the back of your throat and then down the esophagus to your upper intestine.  To make sure that the barium goes down, the tube is threaded through several loops of intestine.  In order to move through the intestinal loops, air has to be blown down through the tube.  When all is in place the barium is pumped in – yes, you can feel it going down.  The barium is infused slowly and every 5 minutes a catscan is taken of the intestinal track to monitor progress.  Procedure took almost 3 hours from beginning to end.

I dry heaved the entire time.  My abdominal muscles are so sore; feels like I was someone’s punching bag.  It was horrible.

Later in the afternoon, I met with the GI doc to review the results.  The intestinal track below where the tube was placed shows no structural concerns.  The doc wants to now rule out problems from the bottom of the esophagus to where the barium had started today.  This means that I am going to have to swallow/barf/swallow/barf enough barium on Friday morning for them to do a similar catscan study.  She thinks there might be an unusual looping of the intestines.  She might want me to meet with a surgeon to review options.  Unfortunately, this will mean a return trip as it would be too late on Friday to get an appointment.

The doc did comment on my “esophageal sensitivity” but she wants to wait until Friday’s test before discussing this issue.  She didn’t have any new suggestions to avoid/reduce the bile fumes that plague me more and more during the night.  If there is a looping issue that can be treated then the bile issues might be eliminated/reduced. Meanwhile, I am on standby to meet with a hematologist because my blood lab numbers are of concern. After my morning appointments tomorrow, I am to report to hematology and basically wait in hopes that they can fit me in at some point.

I left the Mayo Clinic and went on a mile long nature walk at a nearby forest preserve. The beauty and peace of the area helped ground me.  I loved the fact that I had the place all to myself.

Meanwhile, all that air pumped in this morning has finally reached the end of the line.  Barium scented explosive gas is gas mask worthy.  I almost lost consciousness when I ripped a few huge ones in the confines of my small car.  The vapors sucked out all the breathable oxygen before I could roll down the windows.  I can only hope that this will all be out of my system by bedtime.

Mayo Clinic – Day 1

Arrived at Mayo Clinic at 7am this morning.  After some paperwork, I met with the resident for a full medical history and then finally with GI doc who is handling my case.

She was rather blunt about my case.  The issue is either structural  or motility.  If it is structural then it can be fixed with surgery or other similar manipulation.  It is a motility issue then it is not able to be fixed.  She thinks that it is related to motility.

Wednesday I will have a ctscan with nasal barium (barium  enters through tube placed into intestine via nose).  I’ve had this test before and don’t look forward to the discomfort.  If test doesn’t show any structural then it will be diagnosed as a motility issue.

I will be meeting with the GI doc in afternoon to review the test results.

If structural, she will review treatment options.  If motility, she wants me to meet with GI psychologist and nutritionist to discuss emotion aspects as well as long-term nutritional options.

I wasn’t ready to think about this too much so off to a local cave for some exploration.  Then I did some fossil hunting and found some very very cool shell fossils and a fossil tooth.  Definitely a trip highlight!

They did blood labs so I will find out tomorrow about the low blood levels.

Well, that is all the news for today.

All my bags are packed…ready to go

T-minus 9 hours and counting.

As soon as TPN is delivered Monday morning, I will be hitting the road and heading to Minnesota and the Mayo Clinic.  I think I have everything I need but I am sure I will worry too much about forgetting something.

Gathered up a bunch of CDs to listen to while driving (it is a 7 hour drive give or take a few minutes).

I am not sure where I am mentally – not anxious or excited.  I think I am feeling relieved that I am doing something that might bring me closer to a fix or acceptance.

A unexpected bump – blood work came back from Thursday’s blood draw.  Seems my hemoglobin has dropped from 11 to 8 in 4 weeks.   I guess this is not so good.  I am to let the docs at Mayo know this upfront so it can be addressed.  Not sure if it is related to any of the GI issues or if it indicates another problem (sigh, that would really twist my panties).

Not sure if I will be able to post any updates until I get back.  Don’t worry, I will take good notes.

Waiting Sucks

Count down to my Mayo Clinic appointment has begun…

I received the 9 cds of tests from my current medical providers that I will be hand delivering to the Mayo Clinic docs.  9 cds?!!

Trying to figure out all the nitty gritty details of traveling with TPN.  Pharmacy will use the blood labs from this coming Thursday to create the bags for the following week.  Due to the size of the bags storage in fridge is an issue.  They can’t make them for more than a week ahead of time either.

The clinic sent a mountain of paperwork to complete and bring with me…I’ve been wading through it each day.

Meanwhile, my hand joints are really bothering me.  It’s just the finger joints and they ache all the time.  My doc ran an arthritis blood test which hinted at some inflammation but didn’t jump out as indicating arthritis.  The joints used to hurt only in the morning but now they ache all the time.   They also feel swollen when they don’t look it.  Very clumsy with them – and weak.

I have an appointment with my primary care doc the week after the Mayo Clinic visit so I can discuss it with him then.

Meanwhile…just waiting and wondering and worrying.

My income is too low?!?

A while back I applied for medicaid because of limited income and high medical costs.  After waiting and waiting and waiting….I got call back.  I am eligible for a medical card which will help pay some of the medical costs and prescription costs.  However, it will not help with the largest expense which is the cobra payment of $600 a month.

There is another program where you can apply for reimbursement BUT only if your income is above a set amount.  Because I am on SSDI, my income is not high enough for me to qualify.

HUH?

Let’s look at this logically…my income is low enough to help pay for medical costs around $300-$350 a month but my income is too low to help pay for premiums that are $600 a month.  Oh, now that I write it out, it make perfect sense – NOT.

If I drop my insurance coverage and go to just medicaid, it will cost the government A LOT more then $600 a month – the TPN (iv nutrition) is very pricey.

If I drop my insurance and am some day able to go back to work – I will have a hard time getting insurance because of cancer and sarcoidosis.

I also can’t go to Medicaid exclusively because it won’t pay all my medical expenses and I would still end up paying more out of pocket.

—————–

On top of this baffling news comes the frustration of being told that I don’t qualify to stay at the reduced fee lodgings near the Mayo Clinic run by various cancer organizations because I am not in active treatment for cancer.  I’ve run into this road block before – once you are a cancer “survivor” and not a cancer “victim” all financial support disappears.  So many people’s lives have been seriously affected by cancer and the residual complications don’t go away after the cancer is treated.

I’ve met some wonderful people who are struggling in the aftermath of cancer so I know that my experiences aren’t unique.

If you are able, consider reaching out to the cancer survivors you know.  Perhaps there is a way you can help them out.  Even if all you can offer is a empathic ear, please offer it.  Trust me, your efforts will be greatly appreciated.

Now, back to finding the missing pieces to my financial puzzle.