Saturday, March 31, 2012

Support Structure Engineering....

Structural engineering: a field of engineering dealing with the analysis and design of structures that support or resist loads.
From an engineering point of view are structures that support or resist loads are things like columns, beams, and arches.  They are the things that keep the bridge you are driving on from collapsing. It takes a lot of work of thought and a few mistakes to get the design of bridge perfected. Once it is built, we take the engineer’s hard work for granted every time we cross it.

Why am I talking about engineering? Because the columns, beams, and arches used as support structures in engineering can represent the support structures in all of our lives. 

Columns are like our family and friends; they support us by taking on some of our problems and putting it on their shoulders. They lend a hand or are just there when we need to talk. A loving family and close friends who are non-judgmental and willing to help with everyday things can make our lives easier. They are the ones who stay around months after a crisis is over. They are the ones who aren’t fair weather friends. They are the ones who are always there weathering the storm with you.

Beams are our community. The members of our churches, schools, and community centers all provide unique support for us. For patients who are homebound having access to a group of people to talk to and gain support through the internet is essential. They may not come into contact with people in their community on a daily basis so the interaction gained via social networking sites such as Facebook and Inspire can keep them from feeling alone in the world.

Arches are a good symbol for our medical professionals. Primary care physicians, gastroenterologists, surgeons, nurses, registered dieticians, pharmacists and other medical professionals play a specific role in our care. Each piece of the arch is important. They rely on one another to add their knowledge so that the best treatment can be provided for each individual patient. This is by far the hardest support structure to acquire. Communication between members can be like pulling teeth, and communication between their offices and our homes can be just as hard.

Just like actual structural engineering, developing a good support system takes time and effort. And just like a bridge, support systems require maintenance. Talk to members of your family and friends about what is going on, and what kind of help you need. Be honest with them about things. Open communication is the foundation you need for it to work.  If you are having a bad day, week, month, or quarter you have to let them know. A handful of family and friends who are willing to help you in the ways you need them too should be everyone’s goal.

Many of you are involved in our online support groups on Facebook, Inspire or the Yahoo! Group. We have a great group of patients, and caregivers willing to discuss just about every topic that may come to mind. If you can, try to develop a good relationship with your congregation or parent group. Having a community of people in your town is a great thing to have. They may not understand what life is like with DTP, but they care about you. If you have both groups to turn too, online and in your town, your life will be richer.

And ensuring you have a good medical team is essential. I’ll refer you back to a post I wrote in February about choosing your health team.

Let us know if you have any tips for developing a support system. What works? What doesn't work? You can leave a comment here or post them on Facebook.

Monday, March 26, 2012

It Wasn't Medstudentitis--A Guest Blog by Sarah Guthrie

“The only disability in life is a bad attitude.”- Scott Hamilton

“Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think.” Christopher Robin to Pooh – A.A. Milne

One of the first things you hear going into a medical program is medstudentitis- where the student of medicine reads about a disease and suddenly experiences every symptom! Of course it has to be some of the really bizarre or rare ones- like alien hand syndrome or a teratoma. And every headache is a brain tumor.

So when I started vomiting the day after the Fourth of July, during my second semester, I promised myself I would not overreact. I was determined to keep calm. After all, I am a 29 year old woman and certainly knew better than to assume the worst for a simple stomach bug.

I should have known better. I remember one of my nurse practitioner’s telling me that in typical medicine, when you “hear hoof beats, think horses, not zebras”. This saying reminds medical providers that the most likely and obvious answers are the right one. Except, with me, the zebras- those rare and less likely answers- seem to fit. In my three decades I have endometriosis, psoriatic arthritis, and hypothyroidism.

Two months, 20 pounds, an EGD, CT, and a gastric emptying study later, I learned I have gastroparesis. It is believed to be post-viral. The diagnosis didn’t stop the vomiting and at the end of September I was hospitalized with malnutrition and dehydration. I weighed less than I had in high school- and didn’t look my best!

Physician Assistant school is considered a grueling master’s program without additional challenges like constant vomiting. Like many professional master’s degrees, it is a “lock-step” program. I had to complete the didactic (classroom) portion with my class or repeat the entire first year.

TPN- total parenteral nutrition- has allowed me to stay in my program. While I did miss a week for the hospitalization and several individual lectures for doctor’s appointments, I have managed to stay in my program and even excel. Instead of using this as my excuse to drop, I met with my instructors to confirm my continued desire to get my degree. The majority of people I have met were enthusiastic and my academic success has silenced the naysayers. I won’t deny that at times it looked like stopping was the best plan- but I have been wanting to get my degree for years and I have chosen to use my own internal strength to keep going to school.

Going to school with a PICC line was a bit challenging. First- timing my TPN. I have had to attend lectures wearing my TPN as well as bring supplies for weekly dressing changes. The faculty gave me a location to get my dressing changed and labs drawn.  Since I am in a medical program, I have been very honest with my classmates about my health and limitations. During our lecture on TPN, I actually gave a “show and tell” presentation and home TPN and held a Q&A for them. I hope this honesty will aid them in being top medical providers.

I made it through my didactic portion and no longer have to worry about restarting my degree!

The next challenge has started- clinical rotations. The faculty has continued to support me by keeping my rotations within an hour drive of my medical providers. I supported myself by convincing my doctor that it was time for a port. I figured out that I could not do a surgical scrub with a PICC line- so this past week I had my powerport placed.  I don’t think my post-op nurse was impressed when I told her I would be at my clinical rotation the following morning instead of relaxing.

Gastroparesis has shown others what I already knew about myself- I am a strong woman and am capable of reaching my dreams. I am thankful for my medical providers and access to TPN. I have been on TPN for 6 months with no end date planned at this time.   One of my biggest smiles is when I have people tell me that I don’t act ill- I look at each day as a pleasure. I am not depressed and accept that, at least for now, my celebratory steak dinner may not be in my future. But I also know that gastroparesis will not stop me from becoming a Physician Assistant.

About the author:
Sarah Guthrie, PA-S; 2nd year Physician Assistant Student in GA. Sarah is married and thankful for the support of her husband, family, and faculty. Anticipated graduation is May 2013

Saturday, March 17, 2012

My Experience So Far--a UK perspective

My Gastroparesis was diagnosed about 4 years ago after a barrage of tests. I was told by my GI Dr ‘Go home and live with it’. I went away devastated but determined nobody was going to write me off at 35. So I looked to the internet. I found lots of bits of info in the US but nothing in the UK. I contacted the Mayo Clinic and they suggested a few different web sites that may be useful but they didn’t know what treatments were offered in the UK.

I checked and found that if I lived in the US there was an in plant I could have called a Gastric Pacemaker by Medtronic. Through Medtronic I found the contact details for Dr Sri Kadirkamanathan at Broomfield Hospital in Chelmsford. I contacted his Secretary and she was really helpful informed me that I needed to have a Gastric Emptying test to confirm I did have Gastroparesis as it was only my Drs opinion. So I went back to my Dr and gave him all the printouts about Gastrapresis and that to confirm the diagnosis I had to have a Gastric Emptying test. He did agree to arrange the test but they didn’t do them in in my area. Well after a lot of phone calls I had the test done and spoke with Dr Kadirkamanathans secretary again with the results. She let me know that the nearest hospital that did the op was in Leed about 80 miles away. I got a referral to see Mr Dexter or Mr Sarela. They agreed that I was a good candidate for the Pacer.

Then the problems start. The National Health Service in the UK is split into counties. I lived in Derbyshire and Leeds is in Yorkshire, so Leeds would have to apply to Derbyshire for the funding, first of all to have a temporary pacer fitted. Then if that was successful they could go back and apply for funding for the permanent one. Well the application for the temporary one was made in the February and was granted in the July. All the time I was vomiting up to 30 times a day in severe pain. Every time the mail came I was hoping for the letter. I eventually had the temporary pacer fitted in August of 2010. Wow amazing. I woke up and I felt strange not knowing what it was. Well that sensation was HUNGER. For the first time in ages I didn’t feel sick. When I went back to see the Dr, he said they had to apply for the funding for the permanent 1. This was in the September. Every week I would call chasing things up trying to find out if the application had been successful. Finally at the beginning of January 2011 the call came I was granted funding to have the permanent pacemaker fitted. I was astonished I cried as the funding coordinator was telling me how things would go. Later on in the January I was called to Leeds for a Preoperative assessment. I thought great if I’m having this then the operation must be within the next few weeks. Well weeks drew out to months with me calling every week asking them if they had any news. In June I was given the date July 19th 2011.

So I hadn’t seen a Consultant since I had had the temporary one out in September of the year before. On the morning of the operation I saw a surgeon not anyone I had seen before. He told us that he didn’t know if the pacer would be switched on or not when I came out of surgery as he didn’t know how my surgeon did things. (alarm bells should of started then but I continued along the process). I thought I would see a Medtronic Rep but no he said I would see my consultant in Theatre.

Well went to theatre. No consultant. The Anaesthetist said I would see him in recovery and I would have a Morphine pump fitted as I was normally on Fentanyl patches so I would need the pump to deal with my pain.

I woke up in excruciating pain. No Morphine pump. After complaining of severe pain and that I had been promised a pump they finally got authorisation to have the pump put up. Still I didn’t see a Dr but I could tell it was switched on as my stomach was gurgling. It hadn’t done that in years. I was taken back onto the ward and given a small box and told to read the booklet when I felt better. The morning after the nurse came round and said we can take your pump down now as you won’t need it anymore. I was just given my normal pain meds but they didn’t have any Fentanyl patches. She then said I could go home. I said I needed to see a Dr before I could go as I had been told I would see one. I made her aware what I had been told before my surgery and she had nothing to say, just that I could go. I was not at all happy about this as I hadn’t been told what I could or couldn’t do, when I needed to come back, if the stiches were dissolvable or if I needed them removing. I was not impressed, so I made a call to my consultants secretary explained that I didn’t want to cause any trouble but I explained the situation to her and she was amazed that they were trying to send me home. Within 20 minuets a Dr came to see me to explain that nobody from my consultants team were even working today and I would have to wait until the next day to see anyone from that team. He didn’t know anything about the operation I had had so he couldn’t help. The following day I saw a Dr who said obviously the pacer was switched on, the stitches are dissolvable, no bending or twisting for 8 weeks, not to go anywhere near any type of magnets such as in store security systems and I would be seen in clinic in 2 weeks. So off I went home I waited for an appointment to arrive. None did. I called Mr sarelas secretary to find out I would be seen in clinic in 6 weeks where the pacer would be adjusted.

Well the treatment hasn’t got any better. I am still sick every day but not half as much. I am not in as much pain. Each time I have been up to Leeds I have asked if I can go shopping and every time I’m told no and even your laptop computer could alter the settings. It sometimes makes me wonder if they actually know what they are doing. Well they say the operation was a success as my hospital admissions are down and my sickness has reduces significantly. I just hopped that it would be the same as having the temporary Pacer in. Apparently I am expecting miracles. Well aren’t we all. xxx

*about the author: Suzanne was diagnosed with gastroparesis 5 years ago. She is patient in the UK and had a gastric stimulator placed in July of 2011.

Sunday, March 11, 2012

2012 DDNC

I've already written a detailed post on my trip to D.C, including automated telephone calls from the airline that seemed to be telling me that they installed a time machine on the airplane. If you are a friend of mine on Facebook you've probably already seen it. If not here you go: Just Getting There

Metro at D.C's National Airport
What I didn't include were photos so I tacked a few on the blog to show my adventure on the Metro and how nice and calm the hotel lobby was at that time of day. I'll admit it, I'm only showing the lobby so I could show off one of my favorite pairs of socks. After a long morning of traveling Amy Foore, Kim Arment and I spent most of the night in the hotel room wide awake. I had hit the bed by 8pm but was ready to take on the world at 2am.

Waiting for Kim and Amy
 Saturday morning was spent finding a drug store that was open and within walking distance, chatting, and basically relaxing in preparation for the meetings and congressional visits to come. At noon Kim and I headed to the lobby to kick of G-PACT's meet and greet. Hannah H. and her mother Victoria were the first to arrive, followed by Ashley E. and Sarah L. was a great to meet other DTP patients, share stories, goof around, and take part in photo ops (even if some of the photographers were sneaky....)
G-PACT gathering on Saturday 3/3/12

 Mike Smith, G-PACT's vice president, and his family arrived at the hotel while we were meeting in the lobby. His little girl made everyone smile, and it only took us a few moments to decide she was the cutest 6 month old in the world. While we were planning to go sightseeing, Mike and his family were the only ones energetic enough to head to the museums. Kim and I headed back to the hotel room after a few hours, while the members of the Gutsy Teen Lounge were still chatting away downstairs.

You may be wondering where Amy was during all of this. She didn't completely miss out, the girls had gone up to meet her, but she did stay in the hotel room nursing a cold. Which brings us to why we didn't head to the museums I had on my To Visit list. I fell victim to a cold virus (can't blame Amy for it, having been in an airport and held captive in a plane who knows where I picked it up). Just like every other patient dealing with a host of chronic illnesses, getting a virus really puts a damper on things.

In the hotel room checking emails...
and of course Facebook!

Sunday morning I found an urgent care clinic that was open to get a once over by a human doctor. Being a veterinary student I gave myself a once over, but humans and dogs aren't exactly the same. That and I didn't have my stethoscope. Kim and I rode the metro and it took us right to the doorstep of the clinic. There was a Walgreen's next door, which I couldn't help but think was strategically placed. After filling a script for antibiotics and cough medicine with codeine we headed back to the hotel.

Once we got back we an hour or so to gear up for the DDNC meetings. The meetings consisted of  three panels. The first panel was made up of government officials from the National Institute of Health (NIH), the Food and Drug Administration (FDA), and if I recall correctly, the Center for Disease Control (CDC). The second panel consisted of patient organizations, including the American Society for Parenteral and Enteral Nutrition (A.S.P.E.N). I stuck around long enough to hear the president of ASPEN discuss drug shortages, and then headed back to the hotel. I decided to rest up a bit in hopes of making it through the congressional visits on Monday.

Congressional Offices
Monday we all met at the Phoenix Park Hotel where we had our meeting the day before, gathered in our teams, and got a brief overview of our goals for the congressional visits. The top things were funding for the NIH, specifically the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and legislation that helps increase a patient's access to quality medical care.

My team, Team 3, was made up of four people. A pharmacist, a gastroenterologist, a colorectal cancer patient, and me. It was a good mixture of professional policies and patient stories. We met with congressional aids from Iowa, Minnesota, and Ohio. For the most part the aids were interested in what we had to say. Except for one, from my state, who was texting while we were talking to him. I'll try to post more on how to be an effective advocate at a later date, so don't think I'm skimming over what went on to avoid the subject. I think it is better suited as a stand alone post, so we can have a great resource for patients going to DDNC or doing their own advocacy elsewhere.

G-PACT got back together in the hotel room around 5pm and spent the night doing what people do, watching TV and enjoying our last day together. We got up early on Tuesday to get things packed. I flew out around 11am, after braving the rush hour on the Metro (never, never, never again).  Kim and Amy drove back to Pennsylvania around the same time. It has taken me a week to write about the experience, and I'm still reflecting on how things went. Watch for upcoming posts on advocacy, recaps from other DDNC attendees and feel free to ask any question you want!