Day II Update

Our second visit to Mayo was great! Mark had his blood drawn again. We were also able to meet with a financial advisor, a dietitian, and our social worker. I was finally able to sit down and speak with someone about this whole process and felt like I really had a lot of my questions answered. (of course on the drive home, I came up with a whole list of more questions I wanted to ask) Our social worker was a wonderful lady who was extremely helpful and could answer just about anything for us.

Here are a few things we found out yesterday:

1. In the southwest area of the US, there are a list of a number of hospitals that get the "organs" when someone decides to donate. The hospitals go in order of who receives the kidney.
2. For a kidney donation, seniority is how you move up on the list for donation (unlike liver where they take into consideration how healthy/unhealthy you are)
3. Mark's diet consists of not eating much phosphorus, potassium, and a small amount of liquid each day. After the transplant, his diet will be completely different and all of the food he can't eat now he will be able to eat as well as drinking more liquids.
4. Even though Mark feels much better on dialysis, once he has a transplant the social worker said that patients say they feel amazingly awesome after the transplant (I personally can't wait for that to happen to Mark....so he can finally feel amazing and his freedom can return)
5. Mayo clinic works as a team, so next week after all the test results are in everyone from the team (nursing coordinator, social worker, dietitian, the doctors, the financial advisor) sits down and talks about the patient to decide if Mark is able to be placed on the list. From the opinion of the social worker, she said that Mark should have no problem being put on the list. They will then give us a call and send us a letter letting us know the decision. It is also a team effort once the transplant occurs and they work with the patient and caregiver. A total team effort!

This whole process has seemed a bit scary for me at first, but as I speak with more of the transplant team I am feeling more and more relaxed about this whole process. Mayo clinic is one of the leading hospitals in kidney transplants. Here is a link with a few short videos that explain kidney transplants through Mayo clinic.
http://www.mayoclinic.org/kidney-transplant/

Happily ever after...

I have explained to a few people why I am doing this blog, but wanted to address this to everyone who reads this blog, which actually may be more than I had originally thought. When I first started this blog it was really going to be more of an online journal, for a way to release my emotions that sometimes can be hard to talk about with others. I decided, however, this blog will meet a few expectations:

1.  To share my feelings throughout this process
2. To keep all our family members updated on everything that is happening
3. To educate and help others. As an educator, I know I have the natural instinct to help and teach others in my blood. I am definitely one of those people who search the Internet to find everything I possibly can about FSGS, kidney dialysis, and transplants, and still feel like there is more to learn or that I am missing important information. Although some information is out there, I still feel the uneasiness that I do not know everything and out of that drive I have a desire to educate others through this journey and hopefully in some capacity be able to help others afterwards.
4. To reflect on this journey

One thing I promise to do throughout this blog is to remain positive. By remaining positive, I know in my heart Mark and I will reach that happily ever after before we know it!

Day 1

Update of Day 1

We started off getting to Mayo at 6:30 am in the morning. We proceeded to wait until 8 am so Mark could get a picture. A picture! Oh well, it was a rough and early start waiting, but Mayo quickly made up for it.

Mayo gave us this great itinerary that had all of our appointment times and places. They were also great about letting you register before your scheduled time, so you did not have to wait even longer. The nurses and registration staff were all very polite and helpful through the entire process as well.  The morning sessions went well, we even got to meet one of the doctors, Dr. Hamawi, who we will most likely be working with throughout the process. Dr. Hamawi will go through all of the results of the tests we are going through and let us know if Mark will be a candidate for a transplant.

Later in the afternoon, I had a caregiver meeting. This was a very quick meeting, and afterwards I felt like it went way too quick and I did not get all the information I needed. If you know me, I need to know everything now....and realized later on that I can not have all the answers to everything on the first day. So I will just write down all the questions I have and make sure to have them answered before this process. I did however, find out there is a support group for other caregivers, which I may attend this upcoming month. The best way I can be a great caregiver to Mark, I first have to make sure I am caring for myself as well.

Here are a few other things that I found out today as well:
1. Mark has blood type A -- and if he gets a living donor anyone with type A or type O can donate to Mark, if it is a deceased donor only type A can donate (anyone know of anyone who would be willing to donate???) A living donor also has a 5% great survival rate after a year as well.
2. Mark's FSGS may come back after the transplant, but Dr. Hamawi stated that it took a number of years for Mark to progress to this level so he has higher hopes that it would not come back --- but we all know that is up to fate
3. Mark and I are not alone in this process, and we have so much support from so many people

So, Friday's schedule seems to be a bit more intensive with three 2 hour meetings during the day. As always I will keep everyone updated. Until then, we will take one day at a time.

At ease..

A large package arrived in the mail on Friday from Mayo Transplant Center. It provided lots of paperwork that needs to be filled out by Mark's dentist/doctor and read through before the 4 day evaluation meetings begin. It provided us with a schedule of the days activities for the four days worth of evaluation testing that will take place over the next two weeks. As we perused through the material, Mark already made a comment about how he did not want to have one of the tests done (as he has had it done before and has not been the most comfortable test). I will be attending the first two days of testing and we will see if I am needed at the last two,because as a caregiver I will have my own sessions I am required to attend.  According to the paperwork, after all this testing is finished we will recieve a letter from the transplant team letting us know if Mark is able to get a transplant. The paperwork and these meetings will provide us with some answers we have been wondering about for a while now about this entire process and as always I will be keeping everyone updated as we go through each of the days.

Easter lunch as awesome at our house. If anybody didn't know this already, but Mark is an amazing cook. He pulled off another great meal! The only disappointment of the day was that my stomach could not hold the amount of food I wanted to keep eating! We finished off the day by playing a little "apples to apples" with the neighbors and family. Today I have off from school, so I plan on relaxing for a bit and then going to work this evening at JC Penney's. Busy week for the Clark household!

Smile

Mark has his first of many doctor appointments set up through the Mayo transplant center. His first meeting is set for April 27th. This will be the first of who knows how many meetings Mark and I will go through in preparation of getting him ready for a new kidney. I am still confused about the whole process and not sure everything we will have to do before a transplant can happen. I have searched everywhere on how the process of getting a kidney works, and it still isn't quite clear what this journey will all entail or how long this  will take. A good friend of mine asked how I stay so positive throughout this process, and I simply answered "you have to take one day at time and focus on all the good in my life." In my earlier post, I stated I sometimes ask "why us?" I think I know why they chose us to go through this, and that is because we have the strength to get through all of this together.

On a quick update, since the small procedure was done on his fistula everything has been running smoothly at dialysis.
On a separate note, yesterday we had a wonderful celebration at our school for students who made it everyday during our state AIMS testing. We had inflatable obstacle course, jousting, games and activities, and my favorite a dunk tank. Of course I jumped at the opportunity to be in the dunk tank! Let's just say they got me a few times! In the evening, we had a carnival with the same activities, where parents and younger siblings could be a part. It was a fantastic time! It is such an awesome feeling to have the parents and families come out and enjoy time together. At the end of the night, I was exhausted, but it was so worth all the time!

A new chapter begins...

We got a phone call from Mayo this week! Of course, Mark and I are so used to the usual "bad news" that is usually given to us by a hospital and everyone inside, but this call was a good one!

Mayo called to get started with the transplant process--or at least it was the transplant program who needed us to call back, either way it is progress. While we are very early on with the process, it is a small step in the right direction. A step towards not having to be picked with big needles on the same arm over and over again, giving up15 hours each week sitting in an uncomfy chair being seranaded by the beeps of the machine that is keeping Mark alive. It will still be a very long journey, but one that we are so blessed to be able to begin.

On another note, I am always searching the internet for information about dailysis, FSGS, and transplants. I came across a site that was created by patients of dialysis and came across a message that spoke so much truth. It is comforting to know that others are out there who know what we are going through.

You know you love a kidney patient when....

--You stare at their ankles discretely to see if they are underdialyzed

--You worry about their fistula when they cut their hand

--You jump out of bed just to make sure they make it to dialysis on time

--You pretend not to notice when they just have to have fries and a shake

--You secretly wonder if they have taken their meds.

--You can tell when they are faking not feeling well to get out of something, and you know when they are faking feeling well in order to do something - and you let them get away with both anyway.

--You secretly study everything you can about their disease, but you act dumb when they explain something to you.

--You lay awake at night terrified about how alone you will feel if something happened to them, and you cry.

--You fall asleep to the sound of his fistula humming.

I am so very thankful for modern medical technology and dialysis. I am thankful my husband is so strong and and so glad I can be there for him through all of this.

Here is my side of the story...

So for those of you that follow my brother Ryan and sister in laws blog, there has been a few stories going around as to how it all went down. I think Ryan spoke to fast, because I have yet to tell you "the rest of the story." Here it goes, this one is for Ryan and Heidi---and the little man that will soon be running around their household!

It all started when Ryan was chosen to be on the homecoming court. As a little sister, this seemed like an awesome time to come visit my older bro at Madison and have a fun time at a football game! I brought along a college roommate, Mandy, and we were off for the weekend. The evening started at Essen house, this awesome bar with "the boot." This is when I first met Heidi, and could tell my brother was into her. He was actually quite into her and as you will see from the rest of this story. So I can still remember this night, because there was lots of polka music, dancing, drinks from the boot, and so much more. Afterwards, my brother, college roommate, and I were trying to figure out what we were to do next. Well, that was pretty much decided for us. We were going to go to the Frat house because Heidi was there. So we walked what seemed like forever...only to get to the front door and my brother could not get into the door. You should have seen how upset he was. Eventually, the night ended and we all went home.

There may have been a little scuffle at the door of the Frat house....a trek across the city of Madison (or what seemed like it for sure) but in the end two amazing people came together! I am so happy for Ryan and Heidi...and for my first nephew to arrive!

A year of surprises...

Well, this year will be a year of surprises!

It started on my birthday when my 7th hour class planned a surprise birthday party. It truly was a surprise too! I am so used to someone saying something to me...but they kept it quiet. So we shared in lots of "junk food" and then I sent them home!

On Saturday, my neighborhood girls took me out to get a pedicure. This was quite enjoyable like always. Upon my return, I was once again surprised by all the neighbors yelling "Happy Birthday"! Mark did a great job of putting together a small get together and we had a great evening. I love my husband!

Two surprises. Wonder what else will happen this year? I could definately think of a few things that I would like to be suprised with, but alas I'll leave it up to the stars!

Ok, that was way too much for a first post....

so, I felt the need to share just a few of the greatest moments in the Clark household!

Just this week, I celebrated a birthday! Mark decided to show off his baking skills....if anyone knows Mark's cooking one would think he must be an awesome baker too!  Let's just say that his baking skills are not quite up to the same par! (I won't complain though) Well, he made a beautiful looking bundt cake. He did all the right things and let it cool before frosting it. He frosted the cake and was going to place it in the fridge....and thats when it happened! he dropped the cake. He dropped it straight on the ground. Thank goodness it was in the tubberware container, but as we opened it up this is what we saw.

All I could do was laugh!

Take 2

Well, after attempting to start a blog a few months ago, erasing the entries, I am once again trying this again. I have decided to use this hopefully as a place to share my thoughts and feelings as Mark and I go through our journey called life.

So you're probably thinking why did I erase my entries before...why didn't i share them. Well, at the time it was pretty difficult to share, and was more of just a way to vent. I am not the type of person to share my "sob" story to people, and I don't want pity from anyone. I would rather stay strong. I have realized though that this may be a way to help me though all of this.

It was just a few months ago that I was absolutly worried about Mark's health. Little did I know, that his body was fighting for everything. I look back on how his health was, and I am so thankful that he went into the hospital that day when he was experiencing chest pains. It is only human to ask the question "what if", but I know that going into the hospital that day saved Mark's life. Everytime I think about it, I still completely lose it.

So dialysis has begun. While it has brought my Mark back, it has not come without its own obstacles. Last week, his vein blew. Mark said he was in such pain, and was so scared. I hate not being able to be there with him at every single moment. He had a small procedure done yesterday to hopefully clear his vein and allow for the dialysis to run smoothly. As Mark goes through all of this, I always ask why him? why us?

All I know, is that my husband, my love, my everything is the strongest person I have ever known. I love him with every part of my soul.