Cleveland Bound!

Tomorrow we will be leaving to head to The Cleveland Clinic for my surgery.  The surgery is not until Wednesday, but I have an entire day of pre-admission testing to do on Tuesday.  They are very thorough there.

Many of you know by now that this is not my first rodeo for surgeries.  We all pray that "this" will be the "one" that will help.  Only to be let down again.  This time, I am going in with a much different attitude.

With the passing of my best friend, I have realized that the whole story between Kelly and me is so much bigger than me.  I know, without a doubt, it does not end with her passing.  So that means I am left here to continue the story.  However, He see's fit.

I don't know what road I will be going down from day to day regarding this illness.  I pray that this surgery will help me.  But I cannot put all my faith that it will be the end all thing.   All I can do is know that this story and my illness has already passed through God's hands before He gave it to me.  He knows how it will end for me.  I just have to be willing to be faithful and do what my doctors tell me to do.

I still ask for your prayers and petitions.  Pray for my husband and my family as they have endured this illness with me for the past 3 years.  It has been a great hardship for them.  Pray for my doctors and my careworkers.

Thank you so very much.   I will update when I return home.

Goodbye my friend....

This post is dedicated to my dear, best-friend, Kelly Ann Rice.  Kelly was my very closest friend and I loved her as much as I could have loved a sister (considering I don't have a sister, this is what I equate it to).  She and I have been friends for over 20 years.

Kelly lost her battle with Polycysistic Kidney Disease on November 11, 2011.  She died peacefully in her home with her sister, Judy, at her side.  This is how she wanted it and it was on her terms.  She was just too tired to fight anymore and I cannot blame her for that.  I know she is with her parents and is no longer in any pain and no longer suffering.  

 I will forever love you Kelly! 

 Taken at her birthday dinner

She was my Maid of Honor at my Wedding

Still Struggling....

It has been a struggle since my recent hospital stay.  I must admit, that if there was not so much going on with my daughters wedding, I would probably beg to be readmitted!  I never thought I would actually say that in a million years!  But there simply is no improvement in my condition.

The issue that I was admitted for has continued to be a problem.  I have completed the antibiotics that I was given and continue to be plagued with these issues.  The nausea has also been extreme during this time; however, I finally received my Domperidone from the UK, so I am hopeful that will subside once I get back on a regular dosage of the medication.

I have only been able to complete one can of my nutrition since coming home.  This is actually a new type of nutrition again.  This type is already processed so all my body has to do is absorb it.  Whereas with the other formulas, my body had to break the nutrition down.  Apparently my small bowel is unable to do that anymore.  I was released on one can of this new food per night.  That is only 350 calories per day.

Next week I am actually going to go to a Chinese MD to try Acupuncture.  Many people who have Fibromyalgia and various gastric issues have used acupuncture and have found success.  I figure I have nothing to loose by giving it a try.  I wanted to go to a Chinese MD since they are the people that are the experts.  The doctor is located in Mason, OH.

I am going to see my GI doctor on Thursday.  Again, my concern is the hydration and my nutrition.  If I am not able to get it through my J-tube now because of the small bowel not absorbing it, how do they expect me to get it?   I think back to this time last year and things are worse, much worse.   We have even considered going back to The Cleveland Clinic because my nutritionist/metabolic specialist, Dr. Susan Williams, moved there last year and I loved all the doctors there.  The problem was the commute.  But I would be willing to stay there as long as I needed to be there if they could figure something out.

So many questions.......

I want to thank all of you for your emails, texts and phone messages.   Even though I many not reply right away, I do appreciate each and every one of them!

God Bless you!

Bonnie

Home again!

Hello everyone!  I am finally home after my 6 day hospital stay!  While I hate being in the hospital, I knew that I needed to be there.

They were able to find out what was causing my problems.  It turned out that I have a bacteria overgrowth in my small bowel.  This is common for people who have motility issues.  My B12 was elevated and my Folate was low, that was causes it.  I am on high doses of antibiotics for the next 2 weeks.

They did not start my tube feeds until the last 3 days of me being there.  I have only been on 1 can a night at a rate of 20.  That is a very slow rate over the night.  I'm not sure how, or when, I will increase the number of cans or will increase the rate.  But I certainly cannot live on 250 calories a day!

Next week I was supposed to go to Indiana University Hospital to have my stints changed and have my tube changed to a G/J tube from a separate J and G tube.  I have decided to put that off until next month.  Mostly because I need a break from the hospital for a while.

I had wonderful care this time at Miami Valley and I am 2 for 2 for getting a private room.  So I cannot complain.

So now I am back to planning a wedding for our daughter, Chelsea.  She and her fiance, Corey, have moved their date to March 19th!  Not alot of time.  But I managed to get a wedding location/reception, and the food all taken care of from my hospital bed!

God gives me the strength I need.  I keep holding on - just keep holding on...........

Dehydrated Round 2 :( / And a Look Back..... :)

Yesterday my mom took me to get my IV Iron at my Hematologist office.  I was concerned about going because I have been pretty sick since Saturday - again.  I know this seems like a broken record, so imagine how it is for me and my family.

I began rejecting my food on Saturday again.  The very same thing that landed me in the hospital last month for 8 days.  I have been replacing the food with Pedialyte in the hopes of keeping hydrated.

I explained everything that has been going on and my doctor wanted to get some blood work done.  What immediately came back was that my Potassium was very low.  My white cells were a little low but not to cause concern.  The rest of the results will be in today.  

Each week when I go for the IV Iron they are having problem getting a vein due to the dehydration. Dr. Jain wanted to order a PICC line for me.  When I told her that my GI doctors are so against me having one, she changed her mind.  She decided she would fax the blood work along with her recommendations to my GI doctors and let them make the decision.   

Dr. Jain gave me some fluids with some Potassium and my Iron yesterday.  She also gave me some liquid Potassium to use in my J-tube for 3 days.  I go back on Friday to be checked again.

I am waiting to see what either Dr. Wilson or Dr. Wittles, at IU, wants me to do.  

On a positive note, last week I began receiving cards out of the blue from some of my high school classmates.  I was so confused how this happened because I did not know how they would have gotten my address.  It turned out that one my good friends from high school, named Robyn, had called my mom to get my address because our 25th Class Reunion is this year (this is hard for me to believe too!).  During the conversation my mom told Robyn what had been going on with my health for the last few years.

Robyn sent an email out to my classmates about my condition and many of them wrote back wanting my address to send me a card!  I am overwhelmed with gratitude.  I have not seen or spoken to these people in 25 years!  I would have never thought these people would have cared enough about me to take the time to send me card and a word of encouragement.

I called Robyn the other night to thank her and we talked for over an hour.  It was so fun talking about old times and catching up with each others lives. 

I thought I would share my senior picture so you could what I looked like "back in the day" compared to now! :)  

 Senior Year 1986

Today - 25 Years Later

Until next time......

Back from Indiana

Today was my appointment to see Dr. Wittles at Indiana University.  Hugh was unable to go with me, so my mom went along.   As you all know, the last month has not been good for me, so I was anxious to get to see Dr. Wittles to see what answers he could provide.

Since I am continuing to have troubles with the J-tube (the one I use for feedings) with pain, Dr. Wittles feels it would be best to pull my J-tube and to replace my G-tube with a dual J/G-tube.  Essentially, I will have one tube where the G-tube is located, but with two ports.  One that will be used for drainage, just as it is now.  The other port will be connected to my small bowel, so I can continue to do my tube feedings.  Doing this will eliminate the need for two separate tubes and the need for a balloon in the small bowel area, which is what seems to be causing such pain in that area for me.   

I will be having this procedure done on March 8th, the day after I have my stints replaced in my bile duct.  It usually requires an overnight hospital stay.  But in my case, because I already have the tubes in place, it may not require the stay.  However, we will not know for sure until we get there.

Hopefully this will help eliminate the need for the pain medication I am on.   The longer I am on the pain medication, the worse it is for my stomach.  In addition, he cannot perform a gastric emptying study to see how my stomach is functioning until I am off the pain medication.  

In addition, Dr. Wittles changed my medications to help with the nausea and gave me some tips on how to handle with "issues" I am continuing to have with the food.   

We discussed the Gastric Stimulator and the conclusion (as of right now) is that I am probably not a good candidate.  I expressed my opinion that I do not want the procedure.  Dr. Wittles understood my position.

My concern right now is that I woke up today with my back hurting, which worries me that I may on the verge of another kidney infection.  I need to make sure I remain hydrated as much as possible.  I sure don't want to end up in the hospital again.

On a good note, I am going with my daughter this Thursday for her ultrasound to see the baby!  I am very excited about it!  I will also get to meet Corey's parents for the first time.  

Our son, Ben, earned all A's and B's for mid-term grades!  I have to announce this because he has worked very hard to bring his grades up.  We are very proud of him!

I know I say this at the end of every post, but I have to say it again.  I appreciate all your thoughts and prayers.  It means so much to me and my family.

What a year so far....

I just read my last post and realized how far behind I am! So let's start by providing an update.

You last heard that I was going to go to my local GI doctor about my J-tube after I went to the ER when it fell out. Well, I did not get into the see Dr. Wilson. We waited a couple of days to see if the tube would function ok after the doctor put it back in. By Thursday night, it looked infected and was very painful and looked like it was about to pop out again.


So, I called Dr. Wilson on Friday and he wanted me to go to the main hospital downtown (Miami Valley) on that Saturday morning (because Friday nights are awful in any emergency room, as we all know). He wanted this because there was nothing that could be done in his office.

Hugh and I arrived at MVH Saturday morning and I was seen by a Surgical consultant who was able to replace the tube correctly and I was put on antibiotics just in case there was the start of infection. They informated me that Miami Valley does not carry the type of tube I have (this tube was placed at Indiana Medical Center).

Well, I would love to say that things have been great since then. But, you all should know me now that things don't always work that easy for me.

The pain in the tube is still very bad and getting worse by the day. We cannot figure out what is causing the pain. I am going to IU next week to see Dr. witless, so I am going to discuss this with him.

In addition, the nausea has been almost unbearable at times. Therefore, I have had to take excessive amounts of phenegran and/or zofran.

Between the phenegran and pain medication, it have been sleeping a lot. This sometimes creates even more problems because I tend to get very dehydrated because I am not able to drink.

Enough of the bad news. I do have good news to share! Our daughter Chelsea has gotten engaged to her wonderful boyfriend Corey Otto! They are planning a wedding at our home later this summer before he is deployed to Afghanistain.

She has also decided to stay with us until the baby is born in August and until he returns home from his deployment. Our family is excited to be able share this experience with Chelsea and Corey. I took Chelsea to her first appointment and I got to hear the baby's heartbeat for the first time. We go next week for the first ultrasound. This all very exciting to watch this through my baby's eyes.