12/4/18 EDIT: PLEASE SEE THE LATEST UPDATES in the "UPDATE" SECTION
For convenience, here are the key points from the update:
As mentioned in previous posts, Hanna has been on every Crohn’s medication on the market. We met with a specialist in NYC who advised that he did not see any new medications for at least 10 years. His suggestion was surgery, which resolves issues for most patients. Hanna is not most patients. 3 months after surgery, she felt great. 6 months, she felt lousy. One year, we were back to square one.
Since Hanna’s last major hospitalization, she has been completely off of solid food. She developed a nasty infection in her belly and it needed to be tamed. As of September, she has been limited to only water, tea, and clear broths. This is to allow her gut to relax and help heal the infection. It was clear that we needed to do something drastic to get the Crohn’s under control, so we met with the specialist and were given the big news: A clinical trial.
If you google “autologous stem cell transplant crohn's” then you can read about it for yourself, but in a nutshell, Mount Sinai Hospital in NYC has been doing trials for a year and a half. Hanna will be given Chemotherapy to completely obliterate her immune system, then they will use previously harvested stem cells to rebuild it from scratch. The end result is either a) the Crohn’s disappears completely (but could come back in the future) or b) the reset helps her body react better with meds that did not work in the past. Hanna would be admitted to Mount Sinai for up to 2 months during the whole endeavor. It is incredibly scary and incredibly exciting all at the same time. We will be meeting with the trial team on Monday in NYC to determine if we will push forward with this (which we likely will.) Based on prior conversations, we could be starting treatment as early as late December.
You may be thinking “This procedure must be costing them a fortune,” but this is actually not the reason. We have great insurance and I am under the impression that almost everything will be covered B’H.
Chemotherapy can completely destroy a person’s reproductive organs. Hanna and I are young and have been wanting a family for quite some time, but the situation has not allowed for us to pursue this. If Hanna has the treatment, it may never be possible again. As such, her doctor has suggested freezing her eggs, which sounds like a good idea.
“You live in New England! They have great laws enforcing that insurance covers IVF, so no problem,” you might be thinking. Well, remember that great insurance I just mentioned? It’s actually based out of Minnesota, a state that has no such laws. As such our insurance has absolutely ZERO coverage for anything relating to IVF (with the exception of a few tests which are not relevant.)
Ok, fine. Hospitals have payment plans an- …Hold on, I’m being told that all charges for extraction, freezing, etc need to be paid upfront and it is over $7500. Uh-oh. Additionally, we got the quote for the medication and that is an additional $8000, also paid up front.
As you can see, we are in a time crunch. We want the procedure done once the infection is cleared since Hanna will be in a rare stable condition. The procedure will potentially destroy her ability to produce eggs so we want to get them stored ASAP. The storage needs all fees to be paid up front. This is a really uncomfortable situation. We never wanted to reach out for money, let alone twice.
Full disclosure- We are aware that grant programs exist and have reached out to a number of them, however most are for cancer survivors. We have looked into financing as well and can’t seem to find anything. In addition to donations, we will gladly accept suggestions.
Thank you in advance for your help, whether that be by donating or just sharing this post!
Hanna and Yitzy
Hanna has had Crohn's Disease for just over 10 years now. Her condition was a pretty typical case for the first 5 or so years. Over time, her symptoms have worsened dramatically to the point where she is on the severe end of the IBD spectrum. I never thought things would get to a point where we would need to reach out for financial help, but the situation has changed. Please read my wife's story and consider donating if you are in a good place financially. If not, please share this with others!
Hanna's mother had Colitis, a sister disease to Crohn's but with one major difference- Colitis can be "cured", Crohn's is for life. The cure for Colitis is to have your colon and rectum removed, since these are the only affected areas. With Crohn's, the disease can spread anywhere along the digestive system, from the throat all the way to the rectum, and cutting out diseased parts does not eliminate the problem.
When I met Hanna back in 2010, she told me pretty much up front that she had Crohn's disease. At the time, as far as I could tell, this just meant that sometimes she would throw up for no reason. Other than that, she seemed perfectly healthy. We would go out to events together, take long subway rides, visit museums with friends... I hadn't heard of Crohn's before this so I didn't realize how bad it could get.
In mid-2012, Hanna's mother went into cardiac arrest and passed away later that week. Shortly after this transpired, Hanna's health began it's significant decline. Hanna began a job at a grocery store, but this only lasted several months. She was becoming ill due to handling money, interacting with so many people, and having an overall weakened immune system and was essentially forced to quit.
In late 2012, Hanna's digestive system was in pretty rough shape. She was working closely with her surgeon and a surgery was being planned for the first quarter of 2013. Surgery occurred late January 2013 but it was a scary ordeal. We were essentially told by the surgery team "our plan is to remove a small diseased portion of your colon, but you could wake up with an ostomy" which was incredibly scary. The surgeon said that after removing her colon, she saw clear signs that it was in terrible shape and she was really glad that we agreed to remove it. Thankfully, the ostomy was not needed... yet.
Hanna and I married in mid-2013. (She was actually in the hospital just 3 weeks before the wedding!) While her surgery certainly made her feel much better, it was clear that she still had problems. One issue was that food/water would run through her (now smaller) digestive system without fully having a chance to be absorbed by the body, so she was more susceptible to dehydration. I distinctly recall her relatives being furious that we stopped doing family photos before we could get to them. Unfortunately, Hanna was feeling very light headed and we could not continue. I still feel bad about robbing her relatives of this...
In late 2014, Hanna felt it was time to try a job again. Unfortunately, this job did not last long either. Hanna needed to call in sick at least once a week, usually more. It was clear that this would not improve and she left this job as well.
The next few years things became worse and worse. Hanna had tried literally every medication on the market. Some had no effect, some she was allergic to, and one actually gave her ITP, a bizarre auto-immune disease that appears out of nowhere and goes away after either 1 month, 1 year, or never and nobody knows why! (Seriously, google it!) Thankfully, she got the 1 year version.
Many MANY hospital visits were made around this time. To pull a few highlights from my facebook feed:
"Brought Hanna to the hospital (she was very reluctant). I'm really glad I forced her into going; The doctor just told us Hanna had a blood platelet count of 19. When we asked what her normal count was, we were told 300. From 300 to 19. I assure you there are no typos in that statement."
"Hanna was having trouble breathing all day and was very bloated. Turns out she has blood clots in her lungs! We're gonna go ahead and get that taken care of pretty soon."
"Hanna spiked a 105.4 fever and is doing the hospital dance"
Things got progressively worse in this fashion. Hanna developed fistulas (too graphic to explain, look it up at your own risk) which were so painful, that she stopped leaving the house to do things, stopped going for walks... She was no longer productive by any stretch of the imagination. I will admit, I was incredibly frustrated during this time and we got into a number of arguments. I would leave for work and ask her to do one or two things, sometimes partial things like "wash a few dishes" or "fold some of the laundry". I would get home after a long day at work to find things exactly as I left them, if not worse. She didn't have the energy and doing things was painful, but on the outside she looked fine...
Finally in mid 2017, it was made official- we were doing the dreaded ostomy. To be honest, the hardest part was mentally preparing for this major change in our lives. We both had such worries about different things going in, but once the surgery was over and done and we both got our first look, neither of us were even remotely upset by this major change.
Surgery took place in mid-September 2017. The surgeon described what she found and- actually, I should say this first. In prep for the ostomy, you have an extensive meeting with a nurse who does a sort of test run to see how you bend over, where the creases in your stomach are, etc. This is all to ensure that your bag will have a good fit with no weak spots where a leak could occur. The nurse will then draw a dot in the exact spot where the stoma will go and it stays there until surgery. Ok, that said- The surgeon was unable to pull the intestines over to the designated spot on the right side of the stomach, so they had to improvise and put it on the left, something that nobody was prepared for. The intestines had adhesions everywhere (everything was stuck together) and even got stuck to one of her fallopian tubes. Additionally, she said that the diseased portion that was removed "basically disintegrated in my hands" which was a horrifying image to picture...
As early as October, the signs that things were better were clear. I remember getting really emotional and excited over Hanna doing the simplest things. I distinctly recall my jaw dropping at one point when she told me she walked to an appointment a few blocks away "because the weather was nice." The Hanna of early 2017 would have never done that and the difference was night and day. Things were finally back to normal... A happy ending...
NOPE! CUT TO MARCH 2018
Hanna wen't into the hospital for a "day surgery," so called because you are there for one day. So a week later she gets out of the hospital... *sigh*
Upon release, she felt amazing. We stayed in town for the night at her dad's place because I had something local to do first thing the next morning. The next morning, she is vomiting uncontrollably. Back to the hospital! They pump her full of fluids and send her home, feeling amazing again.
Last week, we were visiting my family out of state and, sure enough, she started vomiting uncontrollably. We went to the local ER and it was almost the exact same thing as the above paragraph. In the hospital a few days, released feeling great, 2 days later vomiting uncontrollably (we were back home at this point so she went to her doctors.) Hanna lost a lot of weight through all this.
Here we are, present day. Hanna is, right now 4/13/18 , still at the hospital. Her dad and I have told her to stay as long as needed to make this stop and that we will do whatever is needed to resolve this.
(Everything below this point is from the original goal of the campaign)
Hanna's GI doctor (who is a highly rated professional at a top 20 hospital) is instructing her to follow a very specific liquid diet with a very specific product that will allow her almost complete bowel rest while also supplying her with nutrients that will absorb easily AND promote weight gain. She want's this to be started immediately. Here's the major problem: this is expensive and is not covered by insurance.
Thank God I have an amazing job with a great high deductible policy and an HSA, but I can't even use the HSA to pay for this since the IRS does not allow it. These meals will probably come out to over $30 per day and her doctor will very likely want her to follow this diet exclusively for weeks or months and then add is as a supplement to regular meals once she is back on solid foods. Even if it were only for 1 month, that's already at least $900 for food. It will likely far exceed this. (I had set the base goal at 1000 for the start, thinking we would never hit that. You amazing people have proved me wrong!)
I know it sounds crazy- Among all the hospital stays and surgeries, the thing we need help with is food, but considering that I am the sole source of our income, this strict diet has a MAJOR IMPACT on our financial situation.
Not everyone is in a position to donate, but I ask that you please share this with as many people as you can. Every bit will go a long way in helping us stay afloat in these rapid waters! Thank you in advance for your help!
Yitzy (and Hanna too)
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