Latest Doctor Visits and Update
Posted by juliebernal | Filed under Abdominal Pain, Blood Pressure/Heart Rate, Chronic Illness/Rare Disease, Diabetes/Blood Sugar, Infection/Fever, Multiple System Atrophy (MSA), Total Pancreatectomy & Auto-Islet Cell Transplant (TP/AIT)
July 31, 2012
Last week I had a fever and really bad chills, headache, some swollen lymph nodes, a tight neck, some strange bruising that I’ve had for few months that started to spread and some pain inside of my bones – no sign of cold or flu. I was not doing well and I knew a fever is not something to be over looked since I don’t have a spleen – so I went to my new internal medicine dr. This was my second visit with him. The first time I saw him it was mostly a patient history review – nice to meet you and please come see me whenever you have anything new happen – kind of visit. And my first impression was – this guys seems to really know his stuff and seems nice. So with my second visit (I’m happy to report) I was very pleased with his knowledge, compassion, questions and treatment. I feel so lucky and grateful that my heart dr referred me to him! So the dr said I had an infection (we are still not sure what it was or where it came from). He said an infection can cause the body to thin the blood and can cause bruising. He said based on my history and symptoms we needed to treat the infection fast. He put me on Amoxicillin (an antibiotic in the penicillin group). My fever lasted 4 or 5 days but it finally broke. And I’m starting to feel a bit better and I believe that the Amoxicillin is working. Yay!
Yesterday was my first appointment with a local endocrinologist. He asked some really good questions and seems to be very good with details. We talked some of the importance of vitamins and minerals, diet and nutritional absorption. And I was already taking all of the ones he suggested. So he seemed pleased with that. Below is a picture of all the vitamins and supplements I take in a day:
He also seemed pretty pleased with my blood sugar numbers. I’m still getting some low numbers. For me, I start to feel symptoms of low blood sugar levels at 80 or lower. I’m a mess when I’m in the 70s. I get dizzy, sweaty, clammy, weak and have a hard time thinking. Once I hit the 70s it is a matter of minutes before my numbers continue to drop. So I act fast once I’m in the 80s. I’ve also noticed that most people that have had the islet cell transplant tend to deal with these issues as well even though most doctors say the 70s and 80s are perfectly fine numbers. It seems our islets can have a mind of their own at times. I feel like maybe mine are a bit overactive. I’ve gone from 110 to 45 within 10 minutes before. So, I’m not sure if it’s the fast drop or the lower number – but either way – it sure does drain me. But I’ve been able to control it pretty well by listening to my body. It still puts me in a panic each time I have a low. It’s not something I think I can get used to because it is and always will be something that requires attention as it happens and acting fast is key in trying to keep my numbers level. Last night around 12:30 a.m. my blood sugars dropped to 74 and it was only an hour after eating.
I did a pretty good job eating balanced meals yesterday, I din’t over indulge and counted my carbs. We are told to check our sugars before eating, at least two or three hours after eating or when there are symptoms. They say if you check them an hour after eating they may end up being a little higher so it is better to wait but I can easily get symptoms after eating anywhere from 30 minutes to 2 hours after. And I feel the need to check them often because sometimes it seems I haven’t eaten enough carbs to keep my numbers up. So last night my blood sugars were dropping fast. And I find it strange when it happens at night because usually blood sugars should be a littler higher at night. It is no wonder why I can’t sleep. My hungry stomach and blood sugars keep me up. But I was glad I was awake and was able to get some food down. But I’ve been pleased with the fact that I still haven’t had to use insulin or had many high blood sugar levels. And overall, I would say my diabetes is pretty well controlled.
I had my heart dr. appointment today and it went well. I had some low blood pressure readings the past few days…like 76/40 and my legs have been weak and heavy. 
We are going to increase my blood pressure meds again. I’m praying that the side effects won’t be too hard on me. We are also going to try something to help me get some sleep. I have not been able to sleep at night because of pain, some of my meds, blood sugars and my poor body won’t shut down even when my mind is ready too. 3-4 hours of sleep within two days is not cutting it and is leaving me feeling drained in many ways. Sleep problems are common for post TP/AIT and is also a symptom of MSA. I have been having issues with this for some time now and it has become worrisome to me since I’ve tried many things already to try to get this under control. So I will start a new sleep aid medication and we shall see how it goes. I really dislike the fact that I need to take so many medications but when the doctors tell me it is important for me to be on them – I have to keep an open mind and remind myself that it is something that will hopefully help my body work better as it should. My heart dr. sent over my history (20 pages of detailed notes) to the Mayo Clinic in MN – Autonomic Neurology Group. My dr. said hopefully I will hear back from them soon. And I really hope Mayo will take my case and I can have further testing to help figure out more details of what is going on. Mayo is one of the leading groups in reach for MSA and autonomic disorders. I would love to hear their input and any suggestions they may have. So right now I’m in a bit of a “hurry up and wait” state.
As far as everything else – chest pain, nausea, bowel issues – I have my moments. I’ve been working on trying to keep things managed the best I can. Some days are better than the next. And it comes and goes in waves. I’m still trying to keep my mind in the best place and keeping the faith that I will find more answers and hopefully find them soon. And as far as care…I feel like I’m seeing a great group of doctors and I feel blessed to have not only one – but many doctors who seem to have compassion and who really want to do whatever it takes to get me better.
August 3rd, 2012 at 3:50 pm
Hi Julie, I’ve been thinking of you lots lately and it’s good to read your updates. I’m happy that you have a great team of doctors and will continue to pray that your body regulates and gives you some peace and that you are able to go to Mayo soon. Love ya!
August 18th, 2012 at 5:58 pm
Julie! I have all simptoms as you and definitely same decease as you. I wish you will be cured in near future. I had neck injury two years ago and from this time I got chronic pancreatitis and SOD and painfully attacks after fat meal with chest pain like heart attack and dizziness. ECG shows similar atrial ectopic rhythm as you. And me too have troubles with sleeping. But I need to say I have vertebral arteries insuficienty and I ask you to check your vertebral arteries and whole neck to be sure you are not having brain ischemia. May be brain ischemia starts all these symptoms and troubles with heart pancreas and gallbladder and oddi sphincter. It will be nice of you will check this theory. Again I wish you be healthy! And you encouraged me. Today was worst day I went to ER with bad chest pain… Sorry for my english.