My Diabetic Foot Wound - Part 2

After the doctor called to inform me that I had MRSA, the supply place showed up with the Vancomycin. I also found out that I was very anemic, but they decided not to do anything about that since I was not very active. I was told my protein levels were low but I was never told how to fix those. Being anemic & having low protein levels can both hinder wound healing.

After being on the Vancomycin for six weeks, a second MRI was done. I was told I still had an infection and was started on a second course of Vancomycin. At the end of December shortly before finishing the second round of Vancomycin, I had another culture done and it came back with yet another infection – Serratia marcescens. The beginning of January, 2006, I finished my second round of Vancomycin and had my third MRI. At that time, I was told that the infection was gone.

In February, 2006, I was starting to have alot of problems. I was starting to get really sick again. The VAC had slipped off one evening, and a home nurse that did not work with VACs much came in to change the dressing. Two days later, the regularly scheduled nurse came in and discovered that the prior nurse did not put the protective coating on my foot, and my foot was macerated.

That same week, I tripped and almost fell. I was having alot of pain in my foot and just assumed it was from my foot being so macerated. I later found out that I had actually broken my foot when I twisted my body to try and prevent myself from falling.

The doctor decided to schedule surgery to clean out the wound. I was given a local and was awake for the debridement. He told me that the bone in my foot was fine. He planned on doing a culture at that time and had the nurse set out a culture kit, but he forgot to do it until after he had put something in my foot that would distort the results, so he was not able to do a culture. He said it didn’t matter because he was sure that I did not have an infection. The surgery was on a Friday. The following Wednesday, I saw him at the wound center and he then told me that my bone was soft.

By then, I was pretty sick and decided I was going to see another doctor. I could not understand how my bone could be fine on Friday and soft by Wednesday. My sister knew someone that had taken her mother to a doctor in Pittsburgh for a similar problem – Pittsburgh was a three hour trip for us. That woman was seeing doctors here for a wound and they wanted to amputate her leg – after going to Pittsburgh, she was able to save her leg. My sister called them to get the name of the doctor.

My sister is a nurse and she also called my nurse at the wound center to talk to her to find out the technical aspects of what was going on. My sister was told by the nurse that I was assigned to that the MRI I had in January did show that I still had the infection, even though I had been told that the infection was gone and was not being treated for an infection. They had also put the VAC on my foot and it should not have been put on with the osteomyelitis.

That same night, I was taken by ambulance to the hospital because I was so sick. I was running a fever again and they decided to admit me. The next day when the doctor came in to see me, he did a bone culture – he kept insisting that my foot was not infected. I did not discuss with him that the nurse had told my sister the MRI in January showed I still had an infection. I wanted to give him the benefit of the doubt and felt that because I had three MRIs, that maybe the nurse was looking at one of the earlier reports.

By the time the doctor came to my room, my sister had already called the doctor in Pittsburgh and made an appointment for Monday. I had not been able to call myself since I was in the hospital & so sick. I asked the doctor how long that I would be in the hospital – he told me a few weeks. I told him that I had an appointment in Pittsburgh on Monday that I needed to go to. I did not want to tell him why I was going to Pittsburgh, but he pushed the issue so I told him I was seeing another doctor. He told me that I was not allowed to go because I had a hole in my foot (which he had been treating for 6 months at that point!) and if I wanted a second opinion, it had to be local. He scheduled surgery for the following day.

After talking to my family, I decided that I was keeping the appointment in Pittsburgh and was not going to let them perform surgery the next day – I did not feel comfortable allowing someone that I no longer trusted to perform surgery. That evening, another doctor showed up as my second opinion – a doctor that was chosen by the doctor that I was questioning. I was also taken that evening for my fourth MRI and I found out my foot was broken and still had the infection in my bone, only now much worse than it had been.

The following morning, the doctor came into my room after he heard that I was not going to do the surgery. He again told me that I was not allowed to go to Pittsburgh. I told him that if I had to, I would check myself out of the hospital and that I was going to Pittsburgh on Monday. I told him that I would stay until Sunday so that I could be on the antibiotics for the weekend.

Before I left the hospital on Sunday (and yes, I checked myself out), I asked the doctor that was there over the weekend about the bone culture that had been done earlier. The culture had not made my chart yet, so he had to get it from the lab – I still had an infection in my bone. He made sure that I had a copy to take with me and told me that the antibiotic that the other doctor had put me on was not the right antibiotic for that particular infection, so he prescribed a different antibiotic for me.

The hospital gave me the copies of my records from Wednesday to Sunday when I left on Sunday, but I still needed to get the ones from the wound center. The next morning before leaving for Pittsburgh, we had to make a trip back to the hospital to get the rest of my records.

On the way to Pittsburgh on Monday, I started wondering if the infection I had at the end of December was the same as what I had in my bone (the culture in December was not of the bone). When we got to Pittsburgh, we started going thru the records that I brought and I found out that both cultures were showing the same infection – Serratia marcescens and also a little Escherichia coli thrown in this time.

I met with a vascular surgeon in Pittsburgh. He wanted me to come back the following week to the wound center that he participated in and wanted me to see one of the other doctors there. He felt that I needed a team effort because of the severity of my wound. He also told me to plan on being admitted to the hospital there when I came back and they would do surgery on my foot. He said that unless they scraped the dead bone from my foot, my foot would not heal. He also discussed with me the possibility of doing hyperbaric oxygen treatment because I had what he termed as chronic osteomyelitis. I had brought my records, but not the films from the MRIs, and he wanted me to get those and bring them back the following week.

The following week, I packed my bags and headed back to Pittsburgh. I saw the vascular surgeon at the wound center, however, the other doctor that he had wanted me to see had already left (the doctors there were at the wound center for a few hours and maintained private practices). The vascular surgeon did another bone culture and told me that my foot was mush. He called the other doctor who said he would see me in the hospital. I was admitted to the hospital from the wound center - that was March 7, 2006.

I posted some of the pictures of my wound on the pages section of my blog. Those pictures were taken on Thanksgiving during this stage of the wound. If you want to look at the pictures, here is the link:

http://kellywpa.wordpress.com/diabetic-foot-wound-picture/

To be continued …

My Diabetic Foot Wound - the Beginning

One of the reasons for starting this blog in the first place was to write about what happened with my foot - two months later, I am finally starting to do that! Because this was a two year ordeal (more like nightmare!), I thought it would be better if I break it up into sections.

Like a lot of other people, I learned the hard way the importance of checking your feet every day. My first ulcer was a huge hole in my foot that I don’t know for sure what caused it. I discovered it on a Friday morning while getting ready for work. The day before, I had been at a client’s office that had a gravel parking lot and my first thought was that a stone came thru my shoe. I looked at the shoes I had worn the day before and although there was blood, there was no hole coming thru the bottom of the shoe. I then looked at all the shoes I had worn that week. Monday evening, I had gone to a party at my cousin’s house and wore some sandals I rarely wore - they also had blood on so I knew that it had happened before Monday evening.

The weekend before, I had been outside with my dog Nicky without shoes on. I would always just stand on my deck and wait for him. That weekend, my neighbor was also outside so Nicky had to go pay a visit - she had two Yorkies so I guess he knew she was a Yorkie lover also. I walked in the grass without my shoes on so it is possible I stepped on something that day. Nicky liked to chew on cow hooves. He liked to lie on the floor next to my bed and would frequently leave his cow hooves there for me to step on when I was getting out of bed. Although I did not remember doing that, that was something that I could envision doing & just keep on going.

That particular ulcer took about 6 months to heal. After that, I started paying more attention to my feet and now check them every day. I have always seemed to have problems with my feet though. My podiatrist when I lived by Harrisburg used to joke that I was in there so much he was going to put a sign on one of the exam rooms “Kelly’s room.”

When the ulcer from h*ll started in March, 2005, I was checking my feet daily. I found a small crack on the heel of my foot from my skin being dry. I did what I was supposed to do and immediately called my podiatrist’s office to get an appointment. His office was always very good about getting diabetics in right away - they always asked when I called for an appointment if I was diabetic. I started treatment for the ulcer right away.

Unfortunately, the ulcer was not healed when I moved away in June. That meant finding a new doctor. The doctor I moved away from was someone I had seen forever and he was very good. I had a 3 week wait to get in with the new doctor and it did not matter to them that I had an ulcer or was diabetic. I guess that should have been my first clue!

I started having drainage from the ulcer plus was having pain in my foot. Both of those were dismissed by the new doctor. The Sunday of Labor Day weekend, I got really sick. Because I have gastroparesis and a history of stomach problems, when I was sick in the stomach, I “assumed” it was related to the gastroparesis. By Wednesday evening, I could barely get out of bed and even Ginger Ale was making me sick so it was off to the ER.

One of the things the triage nurse does when you get to the ER is check your temperature - mine was 103. I did not even realize that I had a fever. The ER doctor came in and talked to me, did some blood work & an x-ray of my stomach. He later came back in and asked besides being diabetic, what other health issues did I have going on. He said that they wanted to admit me to the hospital. After he walked out of the room, I looked down and saw the blue surgical shoe on my foot and realized that I had not mentioned the ulcer on my foot. It was also pretty obvious and he did not ask about it either.

After I got up to a room, another doctor came in to talk to me. He asked me about any open wounds and I told him about the ulcer on my foot. They were going to call a podiatrist and I gave him the name of the one that I had been seeing. Another doctor from the podiatrist’s office came in. She was the one that informed me that my SED rate was very high, which was a sign of an infection. An infectious disease doctor also came in. He ordered a culture of my foot. A couple days after being admitted, I had a big purple bubble on the bottom of my foot. The infectious disease doctor was surprised that when they did the culture, they did not break that. When the culture came back, I was told that I had a little bit of everything growing in there – Streptococcus agalactiae, Staphylococcus aureus, candida species and Enterococcus avium.

The podiatrist ordered an MRI. I went for my MRI Friday evening. Saturday morning, the podiatrist came in and she said that the MRI was not in my chart yet. She was going down to radiology to look at it. She said that if there was a problem, she would come back & talk to me. She would not come back unless there was a problem. She did not come back so I “assumed” there was not a problem. Later, the infectious disease doctor came in and said that I had osteomyelitis - an infection that set into the bone. I later found out from the podiatrist’s partner that she disagreed with the radiologist about the osteomyelitis and she did not think that I had it. Needless to say, the radiologist was right!

I had a PICC line put in so that I would be able to have IV antibiotics after being released from the hospital. I was released from the hospital on Wednesday, one week to the day after being admitted. The hospital made arrangements for home nurses to come in and the antibiotics to be delivered.

After I was home, my foot kept looking worse. I made an unplanned trip to the doctors on the advice of the home nurse. That was a wasted trip. On the encouragement of my sister (a nurse) and the home nurse, I made an appointment with a local wound center that was connected with the hospital that I had been in.

My sister took me to the first visit and was in the room when everything was being discussed. The doctor decided to continue with the antibiotics and hold off on any surgery. He did another culture.

My sister took me to the first visit and was in the room when everything was being discussed. The doctor discussed possible surgery, putting antibiotic beads in my foot or just trying antibiotics to start with. He made the decision to try the antibiotics and hold off on any surgery. He did another culture.

A few days later after the culture came back, the doctor at the wound center called to inform me that I had MRSA. I had Staphylococcus aureus, which was showing up as MRSA, and also Pseudomonas aeryginosa infection. They would be switching the IV antibiotic that I was on to Vancomycin and also started me on oral Cipro.

To be continued …

Dexcom Seven Plus vs. Freestyle Navigator

Abbott finally stepped up to the plate on Thursday & offered customers money back if they wanted to return their Freestyle Navigator and get another system. The day after Abbott came out with their offer, Dexcom came out with a special deal for Navigator users. I had already started the process for getting a Dexcom and was just crossing my fingers that it would not be too much of a fight with my insurance company to get it. I called Dexcom about the deal. They had received the paperwork from my doctor that very day so all they need from me is the money. As soon as I get my money from Abbott, my Dexcom will be ready to ship. Abbott promised a quick turnaround, so I hope they keep that promise. I have been without a CGMS for 10 weeks now so am anxious to get started on the Dex. The Dexcom deal was $541 less than what my insurance paid for the Navigator, so my insurance should be happy to get money back for a change!


I did a one week trial of the Dexcom and I really like it. There are a lot of Navigator users trying to decide if they should take the offer or wait things out. Of course everyone is looking at pluses & minuses between the Dexcom & the Freestyle Navigator.

There were only 2 ½ things that I liked better about the Freestyle Navigator. The first one is the distance. I was used to being able to set the Freestyle Navigator down and walk to another room without losing connection. I had trouble with the Dexcom losing connection even in the same room. I am not one to wear belts much so I am going to get one of those Spibelts and that will solve that problem.

The second thing that I like better about the Freestyle Navigator is that Tylenol can mess up your readings with the Dexcom. I don’t take much Tylenol, but really don’t want that option taken away from me either. The morning I started the Dex trial, I woke up with a killer headache. I didn’t want to take Tylenol that morning because I wanted to get a true picture of the Dex. I survived that day, so I guess I can live without my 20 Tylenol pills a year!

The ½ thing that I liked better about the Freestyle Navigator was the ability to get actual numbers on the receiver. It was nice to be able to wake up and remember you had a low or high in the middle of the night and look to see how low or high you actually went. I guess the bean counter in me prefers actual numbers over graphs, but since the rest of the world prefers graphs over numbers, I should get used to it!

The alarms on the Dexcom are far more superior than the Freestyle Navigator. The high on the Freestyle Navigator cannot be set lower than 140. On the Dexcom, you can set it at 120. I don’t like waking up in the morning in the 130s or 140s so that makes a big difference to me.

Also, the Freestyle Navigator beeps at you every 15 minutes when you are out of range. There is a mute button but there is an issue with that going into indefinite mute so I did not want to do that. If you change your alarm settings, then you have to worry about remembering to change them back or falling asleep and waking up high because you did that. With the Dexcom, you can pick how often you want to be reminded. When my BS goes high, it takes about 20 minutes before my insulin even starts kicking in so I don’t need to be reminded every 15 minutes that I am high.

I was concerned about losing the predictive alarms that the Freestyle Navigator has. What I did not realize was that the Dexcom has rapid rise & fall rates that you can set for either 2 or 3 mg/dl per minute. That is actually nicer than the Freestyle Navigator’s predictive alarms. The Freestyle Navigator looks at your high & low settings to calculate if you are gong to hit that threshold. On the Dexcom, if you have your low alarms set for 70 but your blood sugar starts dropping rapidly when you are at 200, it will alert you that your blood sugar is dropping fast. I liked that a lot better because you actually got more warning for rapidly moving blood sugars.

Another nice feature with the Dexcom was when it beeps that you are out of range, the screen lights up and says high or low. The buttons that you have to push also light up. That made it really nice at night when it was dark to just pick it up and be able to see what was going on and hit the right buttons without having to turn a light on to see. On the Freestyle Navigator, you had to hit a button to get the backlight to come on. On several occasions, I was trying to find the right buttons to hit in the dark and actually disabled my alarms. That won’t happen on the Dex.

I know one big complaint people have about the Freestyle Navigator is the size. I previously said that the size doesn’t matter to me but I am retracting that. Size really does matter! Even with all the talk I have heard about the size, I was really surprised to see just how small the Dexcom was. When you put the Freestyle Navigator transmitter next to the Dexcom, it reminded me of the picture I have with my Yorkie next to my brother’s Great Dane.

I had a ton of holes in my arms from the Freestyle Navigator. Originally, I planned on using the same arm but because of the holes, I started rotating arms. Even when I went to change sensors, I still had holes in the arm that I pulled the prior sensor off of days before. When I took the Dexcom out, I had a tiny, tiny little mark and that disappeared quickly. After going thru a very nasty foot infection, I am a little paranoid about germs. Those holes in my arms left an opening for germs to get in.

On a couple occasions, the plastic sensor mount for the Freestyle Navigator cut into my arm. One night in particular, I woke up in the middle of the night with pain where the sensor was. I decided to rip it off and there was an outline dug into my skin from where the mount had cut into my arm. That took several weeks to heal. I know that if I sleep wrong with the Dexcom, that would also happen, but since the Dexcom is so much smaller, it won’t be as big of an area to heal.

I also had several occasions when I put a new Freestyle Navigator sensor on that I had a lot of bleeding and ended up taking the sensor off because there was so much blood. Since I only did a one week trial with the Dexcom, I don’t have enough experience with that to know if that will happen or not, but since the Dexcom sensor is so tiny, I don’t expect much of a problem with that.

With the Dexcom, you can use whatever meter you want to do your calibrations. With the Navigator, you had to use Freestyle strips. Some people will not like that they have to take an extra meter with them if they want to do either readings or calibrations, but I never trusted the Navigator 100% and always took my meter anyway so that was not a big deal for me.

And of course one of the best things about Dexcom is that I have never seen anything about Dex users having to wait over two months for replacements. Since Abbott has now done this same thing two years in a row, anyone that continues to use the Freestyle Navigator has to wonder when the next time this will happen again.

Abbott Diabetes Care

Thursday, Abbott Diabetes Care placed a notice on their website with a notice that they were contacting customers who were waiting on new receivers or transmitters. They said that they were trying to offer solutions for the waiting period. There was a number to call so I called.

They are not able to say when they will be able to replace the system, so if you don’t want to wait, they are offering $2k towards a replacement system if you return the Navigator to them. I also brought up that I have 7 ½ boxes of sensors. I was told that they will also reimburse those. I then told them that my insurance company paid more than what they should have on those, so I wanted to make sure the reimbursement was for what was paid. They will pay dollar-for-dollar as long as long as you have the sales receipt, which I do.

I wanted to make sure that something was in writing if I returned everything to them. They are also sending Affidavits for people to sign. I don’t have a problem with that. I just wanted my money back so I could get a Dexcom. The Dexcom is supposedly cheaper so my insurance company will make out on the deal. The supply company will get their money for both a Navigator & a Dexcom and I will finally have a working system. Everyone should be happy!

They are sending me labels & boxes to return everything to them. They said they are working on doing a fast turnaround.

Even after I accepted the deal, I was offered 90 days worth of test strips. I use a different meter that connects to my computer so declined that offer.

Abbott finally did the right thing for their customers. Although I wish that they had done it sooner, at least they finally did it.

I feel sorry for anyone that works in customer service at the Navigator department. I am sure they have dealt with a ton of angry customers the last 2 months. They all deserve a bonus and a happy hour trip!

Dead Freestyle Navigator Update

It has now been 8 weeks since my Freestyle Navigator died. Abbott Diabetes Care said that they would replace my receiver but they are on backorder. I am still waiting on that replacement.

My insurance requires preauthorization for me to get the sensors every three months. That process had already started when my receiver died and they shipped a week later. I never, ever expected to be sitting here two months later without a working receiver! I still had over a box of sensors left from my first order - those sensors expire in April. The sensors that came in February expire in June. I would have to have a working receiver to use the sensors that expire in June by April 1st - that is obviously not going to happen. Even if it did happen, I still have sensors that will expire before they can be used.

For some reason, when I meet my deductible for my DME, I don’t get statements showing what the insurance company paid. I did not get a statement when they paid for the Navigator because I had met my deductible. A little over a week ago, I received a statement for the February sensors. To add insult to injury, the supply company charged $750 a box for sensors. That is common for supply companies to bill far more than what they get paid. The supply company I buy test strips from charge over $90 for a box of strips that I can walk in WallyWorld and buy for $30. My insurance pays about $35 a box for those. You can buy the Navigator sensors for about $380-$400 cash. That is what I thought my insurance would pay for them - wrong! They paid the full $750. For six boxes, that was $4,500. I am currently sitting on over $5,000 worth of sensors and at least $1,000 of those will expire even if a Navigator showed up today.

I asked Abbott for my money back because they are not honoring their warranty - the Navigator only worked 11 weeks and I have been without for 8 weeks. I was told no. They seem to think they are honoring their warranty because I will get a replacement someday but they can’t tell me when. I brought up the sensors that will expire and I was told that they are working on that. I don’t consider being without a medical device for two months honoring their warranty.

I wanted a CGMS for two reasons. The first being I have gastroparesis and that makes it challenging to balance blood sugar and insulin. I am also hypo-unaware so pass out when my blood sugar drops too low. One time when that happened last fall before getting the Navigator, I was in the kitchen making breakfast. Next thing I knew, I was sitting in the living room three hours later with blood all over my shirt. When you first regain consciousness from passing out with a bad low, it takes awhile before you figure out what is going on. After I got to the point I could move around, I went in the kitchen. Before passing out, I put eggs on the stove. Fortunately, I passed out before I turned the stove on or I would have burnt the place down. I apparently fell and hit something and the blood on my shirt was from my nose. I later ended up with a black eye.

I am back to living in fear again and have had a bunch of bad lows. One night last week, my blood sugar dropped to 13. I am not sure if I passed out or not, but since it was late and I had gone to bed, I “thought” I was sleeping - who knows! I panicked and ate a lot more glucose tablets than I probably really needed. Of course the next morning, I then woke up with blood sugar of over 400.

I had already let my insurance company know what was going on but decided to send them another letter. I sent them a picture of the 13 on my meter. I point blank asked them to get their money back from Abbott so I could get another CGMS. I had the paperwork for a Dexcom Seven Plus and am actually doing a trial this week. I had a doctor’s appointment the morning after the 13 so asked him to sign the paperwork for the Dex. I sent that along with my letter and Dexcom is working on processing that from their end.

I am usually one to just walk away and not file complaints with everyone, but Abbott’s actions are unbelievable. This is a medical device that they are selling that people depend on. Although not everyone that gets a CGMS is hypo-unaware, a lot of people that have them get them for that very reason. I am not the only person suffering from severe lows. A friend of mine told me to write my Congressman - I said I can’t because he died from a medical error (John Murtha).

I then decided to send an email to the Governor’s office. I also looked at the Attorney General’s website and decided to file a complaint there. Because I did not have the statement for what my insurance paid for the Navigator, I had to wait to call them this morning to get that information. They paid $640 for the transmitter and $900 for the receiver. I also have $5,625.00 worth of sensors. On the form for the Attorney General, they asked what resolution you want. I asked that Abbott have to refund $7,165.00. Of that amount, $500 should go to me for what I have to pay the supply company and the balance to my insurance company. I am also going to send my insurance company another letter letting them know that I filed a complaint with the Attorney General.

There was a doctor that posted on two message boards that is also on the waiting list for a replacement Navigator. She said that she filed a complaint with the FDA so I decided to do that this afternoon also.

I don’t know if Abbott realizes that with the internet, current Navigator user all over the country are banding together and making sure everyone is aware what Abbott is doing to their customers who rely on a medical device.

Managing Blood Sugar With Gastroparesis

In the fall of 2003, I had a gastric emptying test done to confirm that I had gastroparesis. Gastroparesis is delayed stomach emptying due to nerve damage in the stomach. The results did not come as a surprise to either my doctor or myself because I had tests done prior to the gastric emptying test that showed I had food in my stomach even though I had not eaten in over 12 hours. What did come as a surprise to me was the lack of understanding/knowledge by doctors in managing blood sugar for someone with gastroparesis.

With gastroparesis, blood sugar can bounce all over the place because if your insulin hits before your food starts to digest, your blood sugar drops. You never know when your food is going to start to digest and chances are, you don’t have insulin in your system to cover it when it does. Even though doctors knew I had gastroparesis, I was still treated as though I must be doing something to cause my blood sugar to bounce all over the place. Once when a doctor was criticizing me, I said, “tell me what to do, I will do it” and I was met with blank stares. I was in the hospital for a week, and as usual, my blood sugar was bouncing all over the place. My last day there, the doctor told me that my blood sugar baffled him. I said “welcome to my world.” Although he did not help me, he was the first doctor to actually believe me that I was not causing it since he was controlling both my insulin and diet.

I talked to someone on a message board that went to the Mayo Clinic. She was told that with gastroparesis, she would never be able to get her A1c’s below 7. I know that is not true because I have done it – my A1c’s have been consistently below 6 for the last two years. You would think that if anyone would “get it,” doctors at the Mayo Clinic would get it! Like me, she was not offered any advice on how to manage.

Besides the lack of information about managing insulin with gastroparesis, most people are not even given information on what kind of diet they should follow. I was very fortunate in that respect because my gastroenterologists’ had a gastroparesis diet on their website. You can find that diet at www.gicare.com, just click on “Diets” to take a look at what kinds of foods are off-limits with gastroparesis. I was also fortunate that my PCP at the time suggested using Glucerna – which is a liquid shake fortified with vitamins and nutrients that we need. I have recently switched to Boost Glucose Control. I don’t know if Glucerna changed something in their formulary, or the digestive issues I am currently having because of an out-of-whack thyroid is causing it, but Glucerna and my stomach don’t get along anymore. That stuff is a major staple in my diet and I buy it by the case.

Your stomach is not normal and you cannot eat like a normal person. If you want to get your blood sugar under control, you need to accept that fact and quit trying to eat foods that are difficult to digest – otherwise, you will continue on the blood sugar rollercoaster. I know the diet is boring. A lot of the foods on the diet are also not blood sugar friendly so you need to skip those. I also follow a gluten-free diet so there are not too many foods left to pick from when you start crossing things off the list! Don’t look at the diet and think you have to eat stuff loaded in carbs – I eat about 90 grams of carbs a day. Although that is not the Bernstein-recommended diet of 30 grams a day, it is not a high-carb diet either.

People with normal stomachs that are opting for tight control split their mealtime insulin up when they are eating hard to digest foods. People using pumps have an extended bolus feature to handle their meals. Why wouldn’t a person with gastroparesis split their mealtime insulin up to try and match digestion? That doesn’t sound like rocket science to me but that was never suggested to me. The only thing that doctors ever suggested to me was to wait until after I ate to take insulin but that didn’t work either. As soon as I started splitting my insulin up to match digestion, I saw a huge improvement in my A1cs.

A great book for managing insulin is John Walsh’s Using Insulin. This was not written for gastroparesis but he has some great tips on insulin usage. He also wrote Pumping Insulin for people on pumps. Another book that people recommend is Think Like a Pancreas by Gary Scheiner. I haven’t read it but it is my understanding that it is not as technical as Using Insulin but still has a lot of useful advice.

I also switched my fast acting insulin to Apidra. Out of the current fast acting insulins on the market, it has the shortest duration and is out of my system in about 2 ½ hours — that is important when you are taking about three shots per meal so you don’t have a ton of insulin tails floating around in your body! A lot of people seem to think Apidra is also the fastest insulin on the market – there are charts published that show it starting to act in 20 minutes, which is actually slower than Humalog or Novolog. That is consistent with what happens for me. When I wanted to try it, I was concerned that it would be too fast for my stomach and my doctor thought the same thing also, but he gave me a sample to try. That was two years ago and I have had no regrets in switching to Apidra.

I have had quite a few people try to tell me that I should take Regular insulin because it is the slowest insulin on the market. My problem with that is that Regular insulin hangs around in your system for about six hours. When I eat, I don’t know if my food will digest in 4 hours or 24 hours so I don’t want insulin hanging around in my body for 6 hours with food sitting in my stomach going nowhere. With Apidra, I can take some insulin that will cover the food that does digest right away and it is out of my system fast. I take more when my food starts to digest. Once my food does start to digest, I need something that will start working right away, not an hour from now. Besides your food not digesting, it is hard to get your blood sugar to come back up when you crash because the treatments for low blood glucose don’t work either (except a glucagon shot). John Walsh does have a small section on gastroparesis in Using Insulin and he recommends using Regular insulin. I disagree with him on that, but I would still recommend his book!

Most importantly, you need to test a lot. Even following a gastroparesis diet, it is impossible to tell when your food decides to start to digest. With gastroparesis, trends don’t happen and every day is different. Prior to getting a CGMS (and I am back to doing that since my Navigator died), I was checking my blood sugar about 18 times a day. I literally checked every hour. It is easy to go from 80 to 180 in an hour, and if you aren’t paying attention to when your food starts to digest, you can end up at 400 instead of 180. It is very important to catch your blood sugar when it starts going up instead of trying to bring it down after it gets high. The only way you can do that is by frequent testing or using a CGMS.

Don’t ever let anyone tell you that it is not possible to get decent A1c’s with gastroparesis! It won’t be easy, but it is very possible. The work is worth it because you can get off those blood sugar roller coasters, quit being sick in your stomach all the time and save yourself from even further complications.