I’ve been worried about my nutrition for a while. After getting my tube I’ve gained my weight back and I have gained some stamina. I don’t look like I’m dying anymore. Since my hysterectomy, I haven’t had the agony of my period, although I’m still in chronic pain. I just don’t feel like I’m thriving, though. I’m tired, I get exhausted easily, I’m still dealing with pelvic and back pain, and random things like body aches, thrush/burning mouth syndrome/ cavities (which I never had before), etc etc. I struggle with maintaining my blood sugar during the day. I have such extreme thirst that I have to drink all day, including getting up several times during the night to chug water. I’m still struggling with nausea and constipation or diarrhea. After I disconnect from my tube in the morning I usually have a couple hours where I feel sick, I feel like I have to recover, so I don’t plan things first thing in the morning. Basically I still feel sick. I’m not sure if all of this is just because I have a chronic illness and eat through a tube, or if there’s something I can do to improve it. Since I’m a fighter by nature, I’m going with the later – there has to be something I can do to improve my quality of life.
I am certain that my nutrition is lacking. The first three ingredients of my tube feed formula, Isosource 1.5, are water, corn syrup, and canola oil. How can that be a nutritionally sound diet? Sure, it has all sorts of vitamins and minerals, but it seems to me that’s the equivalent of eating McDonald’s and coke and taking a multivitamin. Plus I’ve been iron-deficient anemic and had to have iron infusions, vitamin D deficient, etc…and the hypoglycemia.
So now that I’m between crises, I’ve decided to look into a more nutritionally sound formula. Before I got sick, I had a great diet – healthy, organic as much as I could afford, lots of fruits and vegetables. I should be able to keep that up, even if I have to do it through a tube.
Enter Liquid Hope, a formula made by a company called Functional Formularies. I was so excited when I came across it! It’s made from real food – the first few ingredients are water, organic garbanzo beans, organic green peas, organic carrots, organic whole grain brown rice… etc. Dairy, soy, corn and gluten free, organic and non-genetically engineered (here’s a link to an online brochure with more details). It’s too good to be true, frankly. I couldn’t believe it as I read about it. IT’S EVEN FDA APPROVED AND COVERED BY MEDICARE (supposedly)!
I immediately called my home care company, Home Solutions, only to be told that they wouldn’t carry it because they’d had trouble getting reimbursed by insurance – but they had had success with the patients they’d had on it. I called two other DMEs (Home care companies – Durable Medical Equipment) and neither of them carried it, either, although they both said they’d had patients asking about it. One of them said I’d just have to blend my own food (how helpful).
I called the company that makes it, Functional Formularies. They were helpful and told me what I needed to do. They said once my doctor faxed in a prescription they would find a DME that would supply it for me and the DME would deal with my insurance. I immediately called my doctor to ask for a prescription, I knew this would be a process. I didn’t expect the response I got, though I guess I should expect it now – it’s not like things would suddenly get easy for me. The problem is that my awesome primary care, Dr. R, was a resident and had just finished his two year residency. I was really sad to see him go, but he’ll make a great oncologist. He (and the preceptor, Dr. B, who I see the last few minutes of each appointment) assigned me a new resident. I had requested a resident specifically because I feel like they’re less jaded, much more willing to try new things, and harder working. I have an appointment set up with my new doctor next month. I naively assumed that the new doctor would be thoroughly briefed on my case. I was wrong. I called her on Friday and received a voicemail on Monday night saying: “Because I don’t know you, I’m not comfortable writing a prescription. You should see nutrition, or GI. I’ll be unavailable for the next three weeks, I’ll have my covering physician call you.”
Are you kidding me? I was so unbelievably frustrated I almost started crying.
The covering physician did call me and gave me the same lip service. I said “I’ve been going to your office for over two years, my doctor leaves and suddenly nobody knows me? This was supposed to be taken care of! You have all my medical records. What am I supposed to do? Please do this for me. It’s no different than you deciding you want to eat more salads. I don’t even need a prescription to buy this, I just need it so my insurance will pay for it.” She considered this and said she’d talk to the preceptor, Dr. B. I’m so frustrated that I pretty much don’t have a doctor right now. It’s close to malpractice, this gap in coverage/lack of continuity. I wrote an email to Dr. B explaining the problem.
So we’ll see what happens. In the meantime, the company sent me a sample and I bought my own case so I can start transitioning. My plan is to start very slowly and replace 100 mL of my daily Isosource infusion with Liquid Hope. I’m going to do that for a week and then go to 200 mL, and so on.