Stem-Cell Research GOOOOOO!!!
This ball started rolling much faster than I anticipated, after a year of nothing.
I shouldn’t say nothing, I *was* prepping for the surgery, seeing if I could get my crohn’s under some kind of control with medicine. I have not had good luck with this in the past (6 weeks in a Minnesota hospital with pancreatitis because of a reaction to a medication) and one of the medications that my Rochester GI team wanted me to try was a form of chemotherapy, which I was and am emphatically *not* okay with. Luckily, my Eau Claire GI team agrees with me, and so therefore I’m just on double the dose of Humira (which I’m not thrilled about either, but they could not control my crohn’s *sigh*). The double dose of Humira has been the closest to what I would call remission in years. I’ll save you the symptoms of my recovery. (Actually... as of my appointment on the 17th with my main GI doc, he’s telling me it looks like I may in fact be in remission!)
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| Over 50 shots in my belly. |
The reason for contacting my Rochester surgery team was because my Eau Claire surgeon (you remember, the one that placed the seton!) just up and mysteriously disappeared. It may not be such a mystery to his co workers, but to his patients, he just left notes as to who is now in charge of their follow-up. Naturally, he wants me to drive 45,000 miles* (*may be an exaggeration) into Minnesota to have my (still open well after a year) wounds looked at. When I called, the secretary of the study got in touch with me and asked me if I was still interested in participating in the study, which I gave an exciting “YES!” to (because I found out more about it! - just wait, I’ll share) and she wanted me to come in as early as the first week of October.
Pump the brakes, sweet stuff.
As most of you know, I was blessed with a beautiful new niece on October 5. There is absolutely no way in hell that I was going to miss that or any of the resulting early cuddle time with my first blood niece. Not. Happening. Next date choice, please!
November 1 I will come in early in the morning, have an MRI, chill while the doctors take an eternity to look at it, and then have a huge meeting with the colo/rectal surgeon, my gastroenterology team for Rochester, my surgeon’s team, the secretary of the study (who is the shit, and I really love - her name is Jessica), and probably the janitors, the president of the hospital, the person who carries the clipboard, and all those fun people that I can never remember when they pump me full of forget-it-all, in addition to students, cause Ketchup Klinik is a teaching hospital! Then! I’ll be having exploratory surgery and a belly-fat biopsy on November 8. The doctor needs to see what he’s getting into (and last time I knew, he was going to put a wider rubber band in, so that’s something to look forward to :/ ) and then they will take a biopsy of my belly fat to see if they can grow stem cells from it! If they can’t grow any from that batch, they will try another surgery to see….if they can’t get it to work a second time unfortunately I’m out of the study, but for some reason, I am thinking that they will have no problems.
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| Still not my medical team. You can see some of them in the video below, and I'm sure you'll agree as to the hotness factor. |
Then - around six weeks after they harvest and grow the stem cells, they will coat a plug with my own tissue and hopefully successfully seal my wound without any adverse side effects - at least this is the idea. I was on their website the other day, and I wasn’t aware that not only are they interested in being able to cure abscesses and fistulas, but they’re hoping to be able to heal crohn’s itself! I’m going to be posting the link at the bottom that will lead to the hospital website, in case anyone is interested. :)
Here’s where it kind of sucks for me. When I have the first surgery, I’ll have to take a taxi (paid for by my insurance, hallelujah, thank you) before and after, as I have no caregivers available to take me all the way over there and sit for hours before driving me home. The combined trip there and back clocks in around five hours, driving with someone I don’t know. (Luckily I carry my earbuds everywhere - sorry if I’m rude.) It becomes worse during the second surgery. I have to be in Rochester, Minnesota for three days. The way hospitals work for surgeries up here is they give you a voucher with a personal PIN number and a phone number to call. You are to call in the night before (usually after 5pm) and *then* they tell you when to show up for surgery the next day. Jessica - the one I was telling you about up there - said that the surgery call is usually very early.
Not a joke. It’s kind of a nightmare. I want to be in Rochester the night before so I am as settled as possible in my room and not trying to get checked in somewhere while I’m all messed up on surgery meds. The day after my surgery - the paperwork says 24 hours - I’m to have another visit with my doctors before I’m allowed to (finally) go home.
It kinda gets worse for me.
I’m on disability. For those of you who don’t know what that means, it means I am severely limited to what funds I get every month. Of course I pay all the normal bills everyone would, I get no discount. I also pay for food and prescriptions (of which I have a ton) out of pocket. Nearly all of my “extra” money goes for buying groceries/things for the house such as toilet paper, paper towels, laundry soap, etc. Why am I telling you my financial business? Because I don’t have the money to pay for a hotel room for two nights, gas there and back, and food that I will be forced to buy out in some form or another. There are four charity homes around the hospital, and I qualify for only one, which you not only have to pay for ($40 flat fee plus $30 per night) but you also have to clean your room. I don’t think I need to remind you I’m having butt surgery, but I’m having butt surgery with no caretaker. There is no way in hell I can clean up after myself. Not that I’m a pig, but I can’t make a bed properly or vacuum while convalescing.
However:
There is a lovely hotel literally steps from the Klinik. It would be great even if I had to go outside, but I don’t - there’s a skyway and an underground tunnel, so I needn’t be outside at all and in fact could probably be pushed all the way to my room post-surgery. And they have economy rooms for Ketchup patients who just need somewhere to recover. (I don’t need anything fancy, I just want it close so I don’t have to depend on a taxi or shuttle while all I want to do is rest.)
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| So much easier than a taxi or shuttle. |
Conundrum.
I don’t really qualify for anything because I don’t have cancer (hallelujah), and like I said - the one place I *do* qualify for I a) have to pay for anyway and b) have to clean while I had surgery less than 24 hours before.
Sooo...as much as I don’t want to, I think I will have to ask my friends/family/facebook family for help. I wouldn’t publish anything until I had dates set in stone, and right now they’re not quite there yet. Even if I have my belly-fat biopsy on November 8th, that puts 6 weeks at December 21st - which Jessica said that they will likely not do, being that it’s so close to the holidays. She said if the November dates work that it would likely be the first of January.
Bottom line - I don’t want to ask for your help, but I have to. I have a gofundme set up, but I'm not wanting to release the link because I am not happy about asking.
I’m also aware that it’s happening around the holidays and that sucks, but I hope I’m not asking for an outrageous amount. Believe me, I’m going to be as conservative as possible, but there are things that I wasn’t even thinking about until I started doing some research (such as parking - free in Eau Claire, definitely NOT free in Rochester, neither public nor hospital).
And of course I’m going to let you all know via facebook how I’m doing after surgery and whatnot. My roommate’s little girl said that I should take my stuffed bunny with me, just so I have *something* with me. I don’t think that’s a terrible idea. :D
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