Posted by juliebernal | Filed under Acute & Chronic Pancreatitis, Recovery & Coping, Research/Support/Hope, Surgery/Procedures/Tests, Total Pancreatectomy & Auto-Islet Cell Transplant (TP/AIT)
May 19, 2016
Today is a special day for me. A day worth celebrating. 5 years ago today I spent 14 hours on the operating table while one of the best surgical transplant teams performed the complex, life-saving surgery and transplant called TP/AIT. My entire pancreas and spleen were removed along with part of my stomach and intestines; cells where transplanted into my liver. Fewer than 1,000 had been done in the world at the time. I can still remember how severely sick and in pain I was the months before the surgery and how I was not sure I would even make it to surgery or let alone survive it. But I did! And I’m still here 5 years later! Recovery – it was and has been the scariest, hardest, unpredictable (but rewarding) jobs I have ever done. I can only feel humbled and filled with gratitude for the second chance at life, and for the lessons I have learned these last 5 years. I am here today because the team at University of Minnesota hospital, and because of my amazing family and friends. So I just want to say thank you to all who have been such a big support in my life. You all mean more to me than you will ever know. Each day is a gift and there is always a reason to smile. Truly – what an extraordinary life!
Jan.-Feb 2016 updates
Jan. 16, 2016
Been a long time since last updated. Had few good weeks here and there. Really have gone down hill. Struggling with my chronic protein malnutrition. I have been having more days needing a wheelchair to get around. I am very weak and mostly bedridden. I have a cold on top of everything and been under extra stress as well. My tpn (IV nutrition) has been making me a little sick and we had to make adjustments. I am currently not taking in enough nutrition to maintain. I am not able to absorb normally when I eat by mouth. This has been a long battle. I’ve been burning more calories than I’m able to take in. I continue to fight and try to be strong. My muscles are wasting and I am weak and very tired. I have been up and down this road time and time again. It is very painful and it has taken a lot out of me. I will continue to live for the good moments and focus on love and joy. And only time will tell what the days may hold.
Jan. 22, 2016
There is no shame in being different. PICC line and all – it is important to feel good about yourself no matter the obstacles.
Jan. 31, 2016
When you can feel your muscles wasting and your entire body hurts with stiffness. Hello wheelchair! Malnutrition! Ughhhh! The nights are the worst.
Feb. 16, 2016
Well big changes in my treatment…I am having surgery this Wed (in 2 days) to have another port placed, so I can get rid of my PICC line. And after a lot of thought, we have decided to stop my TPN (IV nutrition) since my body started to become too sensitive to it even with all the adjustments. We have the TPN on hold for now and will see how I’m doing after one month, then 3 months out and we can start it back up if I get critical levels again. I have been off it for 2 weeks now. I actually feel more like myself and I am feeling hopeful but it is still a bit scary since my levels are still pretty low. But thankfully I will still be doing IV fluids 3x week which helps. I have been able to drink some liquids and soup and found a protein drink I am able to keep down without any reactions which has been a blessing since I am sensitive to soy and most nutrition drinks. I can eat some solids but it still makes me very sick since my stomach does not empty well enough. I still do not absorb most of what I eat. So not sure how long this diet will last, but for now I will just focus on one day at a time. I never thought I would be able to come off TPN, so I am feeling thankful for this break. And my liver levels have finally gone back to normal since stopping the TPN. So that is very good. I’m looking forward to having a port again. It will be nice having a few days off again without having to worry about caring for my line and will be nice to be able to shower easier again. It is the little things in life. Feeling thankful.
I got my PICC line removed today. What a wonderful feeling. I had it in for 10 months. Used my new port today and it worked wonderfully. Today has been a really good day.
Posted by juliebernal | Filed under Chronic Illness/Rare Disease, Digestion & Nutrition, Dysautonomia/Autonomic Dysfunction & Neuropathy, Feeding Tubes & Total Parenteral Nutrition (TPN), Malabsorption/Dehydration, Recovery & Coping, Symptoms & Complications, Total Pancreatectomy & Auto-Islet Cell Transplant (TP/AIT)
July 1, 2015
Been having bone pain and low energy lately. I am just not able to do much most days. So I had a DXA bone density scan done (recommended to be done every other year for post TP/AIT patients). I found out I have mild-moderate osteopenia in my hips and lower spine. This is like a step down from having osteoporosis. I honestly wasn’t overly surprised based on my history and symptoms, but being only 32 years old, I must admit I felt sad and a bit disappointed to already be facing a bone condition on top of everything else. Just one more thing to try to correct. Add it to my protein deficiency and other malnutrition. But it is not the end of the world. Read the rest of this entry…
March 26, 2015
Hi there. Hope everyone is having a good painfree day. I am starting to have some really good days this last few weeks. With all my chronic health issues I have learned to take the moments and days as they come. And each step forward is a victory and something to be cherished. I have been seeing signs of spring – trees blossoming, flowers showing their faces and hearing birds sing such lovely songs. It was a long winter for me. Hard struggles and many days of only seeing the walls from the bedroom where I rest day in and out. And at times I felt maybe my new normal was of such – a set back holding on to me as I fought my body and felt my muscles deteriorate.
Posted by juliebernal | Filed under Chronic Illness/Rare Disease, Digestion & Nutrition, Dysautonomia/Autonomic Dysfunction & Neuropathy, Feeding Tubes & Total Parenteral Nutrition (TPN), Gastroparesis (Delayed Gastric Emptying), Hospitalisations/ER Visits, Infection/Fever, Malabsorption/Dehydration, Power Port/Central Venous Line, Recovery & Coping, Symptoms & Complications
Recap from Facebook Posts from February 2015
Written on Feb. 4, 2015
Been having a rough few weeks. Many of my conditions are in a flare up. In and out of paralysis with my arms and legs. Abdominal pain and nausea have been a bit rough today. Low sugars from not being able to eat. Only able to take few sips of liquids. Been spending most of my time stuck in bed. Ready for this bad patch to improve. Tomorrow is a new day. Hope everyone else is doing ok and having a painfree day. – Julie B
Written on Feb. 5, 2015
Really bad nite last night. Now running fever of 101. Feeling very bad right now. Still not able to eat. Port site has been tender. Called to have home nurse come out, but if it continues to progress it might be a trip to the ER. Praying it is just something simple and not sepsis. Really could use some good thoughts and prayers right now. Read the rest of this entry…
Dec. 9, 2014
I wrote this back in Dec.: Amazing how I have been adjusting to such a new normal. One day I can feel overtaken by sickness and pain, and then come tomorrow I have already let go of how hard the day had been. On to the new.
Only two weeks ago I was lethargic and stricken with an infection and fever of 102.4. My fever lasted three days before I broke down and went into the ER upon the request of my home health nurse and doctor. I have become beyond stubborn about going to the ER. My husband shares my feelings of the ER. And I know, I know…my health should come above my fears of being treated poorly. And I should follow my own advice I give others. Not having a spleen and fever over 101 means treatment is needed. Plus being on TPN, fever should always be looked at because risk of sepsis. My home nurse saw me limp and unable to stay awake when I had whatever it was. She was truly worried about me at that time. For me, I was worried, but it was another fever, another infection, and another hump to try to leap over. (By the way, my fever is gone and I am doing much better now since doing my round of antibiotics.) It was actually pretty scary how sick I actually got. I was in tears and in pain the whole time I was at the ER…when I finally ended up going. But I have noticed, infections and never ending of “who knows” what is next with my health keeps happening.
Like right now, I am dealing with abdominal swelling and nausea and I am just too weak to get up and do anything. My head has been making me feel dizzy and my blood pressure has been low. My pain is a bit high today and I am just not feeling so great. But come tomorrow, I will have forgotten about today and I will be ready for whatever the new day will hold for me. Each day is a new day.
Nov. 22, 2014
Moments reflecting. The days lately have been filled with reminders of how important love and compassion truly are. Family and friends grieving for a loved one, a family member taken to surgery, a husband worrying and caring for a sick wife, a survivor back in the ICU unable to eat and breathe, a father living at poverty levels even though he works hard and endless hours to provide for his family, a friend trying to get proper treatment for a family member who battles addiction and depression, a homeless elder cold and hungry, a young daughter and son who live in daily pain as the mother tries desperately to find a cure, a patient slowly dying and unable to buy his medications or get proper treatment because they cost too much or are not covered by insurance, a nurse who puts her patient’s needs before her own, and a doctor who spends all his time away from his family to take care of everyone else’s. The list could go on. The world is big, and the day holds many.
As time passes I find myself letting go of the little things. Learning to live in the moment. Focusing on what is important in life – like what is needed instead of wanted. Forgiving the imperfections of myself and the world around me. Offering a hand and a hug to those in need. We all have our own battles to face; hardship is hardship and should not be judged or compared. So, I try to treat people the way I wish to be treated. While tears fall, I wish to be the shoulder. And while I may not be perfect, I always try to be the best version of myself. I can reflect on my struggles in life and see how I have grown and overcome many challenges. I can take a step back from my past and see where I started and how far I have come. I have let go of worrying about the if and when. Because truly, this life is unpredictable. I can do my best to survive and thrive. But I cannot control every detail of how my body may cope, or how time or events surrounding me may interact. All I can do is try to live the fullest life I can, with an open heart. I am so thankful for the moments and the memories. And feel so blessed to have so many friends and family who have shared their stories and lives with me. We can get through some of the hardest times – with a little compassion – we can grow. And this is the beauty of life.
And today I take a moment and reflect; for those I listed above. For those in need of some good news. For those of the broken hearted. For those who are living and acting with sincere empathy; I thank you. My heart is with each of you. – Julie B.
Posted by juliebernal | Filed under Chronic Illness/Rare Disease, Digestion & Nutrition, Dysautonomia/Autonomic Dysfunction & Neuropathy, Feeding Tubes & Total Parenteral Nutrition (TPN), Malabsorption/Dehydration
Oct. 31, 2014
It has been too long since I gave an update. I have been doing pretty well lately and seem to be mostly stable with everything. I am still on my TPN and down to every other day. I gained all my weight back and then some. I am very pleased and it feels much better to no longer have my ribs poking out. I have had more energy too which means I can enjoy at least one activity or so a day. Still need to be careful to not overdo it. I was able to go on vacation early this month and really enjoyed being able to visit New England in fall. I grew up in the north and it brought much needed relaxation and feeling of peace to be up there. I even got to do a very short hike. The fall colors and views all around were beautiful. But the walking did drop my blood sugars (which always happens with any activity) every 5-10 minutes though down to the 50s. Not very safe! I was shaky and short of breath. And my husband was worried the entire time. I kept saying I would be fine and I could do it. I ended up keeping candy in my mouth the entire time which helped a lot. So as much as I love a good short and easy hike, it is something I only do once a few years. But enjoyed it even with having to stop for 1,000 brakes. Lol.
Posted by juliebernal | Filed under Digestion & Nutrition, Dysautonomia/Autonomic Dysfunction & Neuropathy, Ehlers–Danlos syndrome (EDS), Feeding Tubes & Total Parenteral Nutrition (TPN), Gastroparesis (Delayed Gastric Emptying), Malabsorption/Dehydration
Sept. 15, 2014
Finally! A new normal.
I have been learning to cope and adjust to being on TPN and being hooked up to a tube and needle in my chest every night now. I was very worried in the beginning as I started my life on TPN. The protein and fats part of the TPN were making me very sick to the point I thought I was surely feeling death within me and knew I would not be able to live a life of being in a constant state of sleep and confusion. Within 24 hours of having lipids removed I began to feel more like myself. What a relief. Now the worry has been how are we going to get enough protein and fat in me; enough for my body to remain functioning. My prealbumin levels have been dropping over the last few weeks. I have been dealing with some facial swelling and fluid retention. When my prealbumin levels have gotten severely low in the past, it has never been very pleasant and it down right scares me. I fear getting to that stage, so I am working as hard as I can, my body allowing, to keep my health as stable as possible.
Overall, being on TPN 12 hours a day is a new normal for me. It is like second nature now. And I have become comfortable sleeping at night and have been doing well with not getting tangled up in my tube. Or remembering to carry my bag which contains my bag of fluids and the pump. It is kind of heavy, but I sleep most of the time I am hooked up to my TPN. I have become a pro at doing flushes and even removing my needle from my port in my chest. My husband has been amazing at preparing my TPN, adding the vitamins to the bag, putting my needle in and has been amazing as a caregiver. He is my world and I would be lost without him. He is the one who helps with giving me my morning Meds and he stays on top of my overall well being.
I am feeling thankful for being able to adjust and for being able to enjoy the simple moments. I have been able to eat some. But broth soup right now is the only thing which has not been causing pain. But getting some nutrition and hydration I feel some of the pressure has been taken off of me. Like a heavy weight has been lifted. I can sleep better at night and feel like I am getting a bit more energy back during the day. I am still queen of naps. I tire easily and the days I push myself, I can spend days recovering. But I am finding peace with my new life. Adjusting to a lifestyle that once scared me to my core. As taking in each new change, I am like a baby bird learning to fly. Now my wings are taped, I can enjoy the view around me; even if for only for a few. Until it is time to rest, recover from a day of adventure. I see so much beauty.
Aug. 27, 2014
The last few weeks I have felt like a zombie. Sleeping hours on end, too sick to move or feel like myself, low blood sugars and severe nausea. Hubby sometimes having a hard time waking me. Covered in hives under my port dressing from adhesive allergy. Has not been easy for me lately. Pretty sure my body is not tolerating something in my TPN (my main source of calories and nutrition). But I do feel like the TPN has been working and helping with my starvation.
We believe maybe the lipids (protein and fats) part and the main source of calories in the TPN that could be making me sick. Lipids are mostly made up of soy oil and I have noticed over the years I have become very ill after having soy from my body not tolerating it. Same reason I do not do well with feeding tube formula or almost all protein drinks. And from what I heard, only soy based lipids are approved for use in USA. So does not leave me with many options. Yesterday I took a day off from TPN and it was the first time I didn’t feel deathly ill in few weeks, but also left me hungry. So my body is really reacting to something in the TPN that my body cannot handle. But I still need the nutrition. Tomorrow adjustments will be made. Talking about removing the lipids, so feeling a bit more hopeful. Most say it takes time to adjust. I am still grateful for having the TPN and for nutrition and calories. Because without it, it hurts and is scary to starve. So hoping my body will do better soon with new adjustments. Thankfully, I have started to be able to eat some soup and a little bit of simple and plain foods in very small amounts. Baby steps. Thanks for all the support. It has been a scary time for me. And has not been easy talking about all of this. I tend to say I am ok when I am struggling because I just don’t know what else to say. But it has become clear I am pretty sick and this is just part of my life. Trying to stay alive each day I wake. Just thought I should give an update since many have been asking. Thanks for reading. Good thoughts to everyone.