Day 1: Blessed

The day finally came! Mark went into the pre-op around 5:45 am. We were sitting in the waiting room with our donor, Tori, before he went in to surgery. Mark and I shared an emotional hug, and he was prepped for surgery. Once they had all the IV's hooked up and such, my mom and I were able to go back and see Mark. We were able to spend about another 45 minutes with Mark and Tori (who as in the same room) before they left for surgery for good. Tori left first, then Mark left 10 minutes later.

Wow, the emotions began to flow then! I was totally freaking out watching the board with his ID number. The surgery started around 7:30 am and after a long, long, 4 hours they called us up to talk to the doctor. The doctor said everything went well--the kidney turned pink and began to create urine right away. Mark had minimal bleeding and did not need a transfusion.  There would be another 2 hour wait until we could see him. Miranda, my neighbor came by to help me through this and between her and my mother they kept me talking at lunch--trying to keep me from thinking about Mark. They did a fairly good job, cause by the time we were going up to the 2nd floor Mark already had a room.

We went up to his room and as I was entering the room Mark was being moved from the surgery table to the bed---let me tell you he was in such pain. I almost went in there and kicked all their butts, but decided to listen and go back into the waiting room until they were ready. Another long, agonizing 10-15 minutes went by and the time finally came!

Mark was in a lot of pain when I first saw him. Even the "every 6 minute shot of cocktail" wasn't seeming to ease his pain. I was so so scared and wanted to do everything I could to help him ease his pain. One thing Mark said though was that he was hungry--some things never change!

Well, by this evening his pain was a little better. Tomorrow he will get to eat "real food" and he will be getting up and walking.

Tori will be able to go home tomorrow. She is an amazing person!

Well, I am off for now. I will update more later. Thank you for all the thoughts and prayers---it helped us get through this today! I'll leave you with the words of Mark--within the first hour or two after he was recovering I asked him how he felt and he said "like a cherry pie exploding in his mouth!" For those of you that really know Mark, I think he is on the road to recovery!

Big day tomorrow...

Tomorrow is the big day. For those of you that are followers of this blog, I will hopefully make updates on here if I can each evening. I will also be making updates via facebook, as many of our family and friends are on there.

Thank you for all the prayers everyone!

Love and Support

I am surprisingly calm these days before Mark's surgery. Of course, when I think of all that has to be done once Mark is home (taking blood pressure, temperature, meds, taking him to appointments 3 times a week, etc.) I get a little scared and nervous. Even though that scares me a bit, it is a good scared nervousness--never thought I would say that. All the other times i take Mark to the doctor I cross all my fingers and toes hoping that they do not find something "bad" and now Mark will be on his road to recovery!

There is still a small chance that Mark's disease could come back into the donated kidney. Unfortunately doctors do not know the root cause so they do not have a cure for FSGS, but I know Mark is strong and will do his best to take care of this kidney and FSGS!!!!

On other happy news, I feel so blessed to have such a wonderful family. Everytime I open up a card or read an email I know that so many people are praying for Mark and his health. A million thank you's would never be enough to show how much that means to Mark and I. I know that Mark will not be alone in the surgery room--with all the love and support we have recieved through all of this. Mark's family has been amazing as well, and will be there to support him as well. So much love!

Updates: After Mark's surgery, I will be making phone calls to my Dad and siblings. I will be asking them to relay the information on to everyone else. I will also be making daily updates on here in the evening to let everyone know how he is doing. The doctor is thinking Mark will be in the hospital for only 3 full days, so hopefully we will be home on the 29th or 30th of December if all goes as planned.
 (Perfect timing to watch the Rose Bowl Game).

Hope everyone has safe travels and a wonderful holiday season! Love you all!

The Clarks

Nephcure Walk

Today I participated in the 1st Nephcure Walk in Phoenix! I am so glad I participated (and thank all those who donated to the cause)!

The people I met today were amazing and inspirational. There were 3 young children who were running around playing, who also had FSGS. They have endured a lot of hospital stays and currently take predisone (which is a type of steriod) to keep the disease dormant. I truely hope this works and they can continue to enjoy their childhoon the way they should. I also met another woman (in the picture below), who had a husband who suffered from FSGS. Her and I bonded at once...it kind of crazy that it happened. Her and I both new what each other has gone through and we instantly felt that connection.

 I was also able to meet Lynn and her husband. Lynn has worked in the non-profit for most of her lifetime and her husband of 7 years has become involved with Nephcure since then. They were so welcoming and were filled with positive energy. Her husband spoke with me for some time and I know that he is doing him part to fight for finding what causes FSGS and its cure.

At the end of the walk, everyone was so excited to start for the 2nd annual Nephcure Walk in Phoenix for next year. I know I would like to become more involved with the process and cannot wait for Mark to join in the walk next year. I think Mark and I have felt like we have been alone and do not have someone to talk to that have gone through what we have gone through. (Mark and I love our family for all the support they have given us, but knowing people who have been through the same thing as us is a bond and connection that is comforting).

A start to find the cause and cure for FSGS!

Thanks!

As I reflect on the last few years I overcome with so many emotions, memories, and heartache. Even though the first 2 years of our marriage seemed to be a roller coaster of ups, downs, and twists I can honestly say that I am thankful for all that has come from this time in my life. It is in these times, good and bad, that I have grown mountains!

I Am Thankful

 I am thankful for a husband who is the strongest, most determined person I have ever known in my life. I still find it absolutely amazing even though Mark was kicked and punched at our lowest, the amazing qualities that I fell in love prevailed and he kept us pushing along and telling me everything will be alright, never once giving up on the fight. 

I am thankful for such supportive family and friends. I know there have been many prayers for Mark that have been said and for this I am truly blessed.

I am thankful for parents who have taught me the values, which has allowed me to get through the hard times with strength and perseverance.

I am thankful for my siblings, Ryan, Heidi, Renee, and Erin, for being there for me even though you are hundreds of miles away.

I am thankful for neighbors who are always there for Mark and I.

I am thankful for wonderful coworkers who have been supportive through this whole process, even on those days when all I wanted to do was go home and cry.

I am thankful for past and present students who have been the constant reminder to me to always be a better person and role model for them.

I am thankful for Tori, who is giving my husband a second chance at life by donating her kidney.

I am so thankful for so many things in my life!

Everyone needs someone...

I just found out from my vice principal that she knows someone close to her just found out he needed a kidney transplant. He is only in his mid-30s. My thoughts and prayers are with his family and wife.

A difference a year makes..

I still can't believe I am sitting in my house, with the front door wide open, and a small breeze flowing throughout the house. The temperature sits at a whopping 75 degrees. Last year, I would have been shivering as if I was stuck in the middle of a snowstorm. You ask why?

This time last year, Mark's kidney's were on their way to shutting down. One affect of kidney failure is anemia. This is when your body does not create enough red blood cells, so the body does not get the much needed oxygen that the cells carry throughout the body. So last year, we had our heat on in the house...usually at or around 83 degrees. My body became adjusted to this, and I would be freezing all the time!

Now, I can sit here and feel comfortable. What a difference a year makes!

This holiday season I am so happy! My wonderful sister Renee and her boyfriend are coming down in December. I also just found out that my mother was able to get off from her work and will be here during Mark's surgery. This is awesome, because I will be freaking out (for lack of a better term0 during the hours while Mark is in surgery. I am also really glad I have a wonderful district to work for. My superintendent has been very supportive, and has allowed me the time I need to take off for Mark's final day of appointments on December 14th.

Only 22 more sessions of dialysis for Mark until his transplant. 52 more days!

Pretty crazy...

Mark's surgery date is the same date as his dad's birthday. I am sure his dad will be looking over him that day.

Amazing Story

A gift that can never be forgotten.

http://www.cbssports.com/video/player/play/nfl/hBlG9er_QVcnTFJ3uOa7AFsOTcHnDdUq

Wonderful article

One more night until Mark makes his way back to Phoenix! Way too excited!

On to a great article I read in today's Arizona Central newspaper. The article spoke about offering a free funeral to those people who donate kidneys, livers, and other organs in London. Could you imagine?! The only downfall is they would not offer the same to a living donor---but either way it is an amazing way to help people make the choice to donate his/her organs.

Here in the US, the only free funeral one could get is if he/she donated his/hers body to science. This sounds like an amazing way to help the science world--and will be my choice when the day comes for me. What better way to give that gift to possible help others. Before all that though, I will donate any and all of my organs to those out there waiting for that phone call to rush to the hospital and recieve a new heart or liver or kidney!

Got to Have Hope...

86 days....

37 more times Mark has to go to dialysis! Amazing!  I spoke with the woman at work who has also had a kidney transplant (2 actually), and she was super excited to hear the news. She also said that Mark will feel amazing after the surgery and will probably wonder how he functioned pre-transplant.

Wonderful News!

Our wonderful friend Tori is a match! The transplant is set for sometime in December! This is such wonderful news...I have cried so many tears of happiness! I feel such a heaviness lifting off of me...for now! I only wish I could be with Mark when we heard the news.

My emotions and excitement are so difficult to explain right now...but it sure feels amazing to get good news!

Followers...

I really have no idea who all tunes in to this blog. I do know that my parents tell me that many people back in my hometown are thinking of us and hoping for the best.  Throughout this process, I know I need to make a difference in any possible way I can. I have decided to do a walk for the Nephcure Foundation. This foundation is for FSGS research. For those of you that have been reading I would love for any donations to the foundation in honor of Mark. You can follow the link below and make a donation at the website.

http://nephcurephoenixwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=994044&lis=1&kntae994044=0616B4C4EF4D43D890A7B79E4A084032&supId=338412767

Thank you to all!

Anxious...

Tomorrow may be the day that we find out if our dear friend Tori is a compatible match for Mark. Everyone keep their fingers crossed and hope the phone call we hear tomorrow is a positive one.

A week....

In a little over a week we may know the decision from Mayo whether Mark will get a kidney from our dear friend Tori. I remember having these crazy anxious feelings when our neighbor was going through all the tests, and now I am starting to feel those emotions again.

Will she be a match? If it is, when will it happen? Will I be able to be a good caregiver for Mark? How will my job be without me? Will my students be ok with a sub? Will Mark be able to keep his job that he just spent all this time training for? Will Mark do ok with the surgery? Will he recover without any complications? ........and the questions keep on going through my head.

I still have no idea if it will even work out, but as soon as I tell myself not to think about it (for fear of getting the typical "bad news"), I find myself thinking about it a lot.

NephCure - Nephrotic Syndrome and FSGS

I will do all that I can to make a difference within my lifetime to support the Nephcure Foundation, which is the foundation that funds for research specifically for FSGS. Today, I woke up to getting a video on my email of a video from Nephcure.   Chekc it out....Mark makes his debut in the video.

I have also decided to donate through my job at JC Penney's to donate a portion of my check to the local Nephcure foundation.

There is also an upcoming walk for the AZ Nephcure coming up in December.

Every little bit helps!

Tuesday, September 27th

So our dear friend is finished with her testing and we hopefully will hear results on September 27th. Wow, this is kind of scary. Once I again I sit here and every bit of me wants to be excited, but I have learned that I cannot do this for my own sanity. A part of me is still thinking about what if this really does go through. There will definately be a crazy whirlwind of a month if it does work out. Just to crazy to think about.

On another side note, I have been thinking selfishly lately. I was thinking about how so often so many of my friends always ask about how Mark is doing. How is his health? What job does he have? Is his job ok with dialysis? Sometimes I wish people would ask about how I am doing? Even if I think people would ask, I still think I would be the person who would try to put up a strong front and pretend that I am super strong and nothing affects me. Sometimes I wish I could just give myself permission to totally show all my emotions about how I really feel sometimes, without feeling the guilt of being "that girl who is too emotional and has issues."

All my life I have wanted to be a teacher, but with all of this craziness I could really see myself become a caregiver advocate. Within a family so much energy is given to the person who is sick, and often the caregiver is just expected to be strong throughout it all. That will be my goal, to support those who support the sick.

Technology is Amazing

Dialysis is amazing, but this new technology seems even more amazing. Check it out!

http://www.5min.com/Video/The-Artificial-Kidney-Alternative-to-Transplantation-517004149

A Selfless Act

Our dear friend will be starting her testing this week for donating her kidney to Mark. I still find it absolutely mind-blowing that people will step up and be willing to do this for Mark. It is these selfless acts that make me analyze my own life and want to do better for the transplant community. Updates to come as we find out more.

My own sister, Renee, went around and around just to see what her blood type was to see if she could be tested as well. Unfortunately, she is not a blood type match, but this also shows me the selfless act and determination to help.

I posted a video yesterday and if the latest tests do not work, I will be looking into doing the paired kidney exchange. My own blood type does not match Mark, but I know someone out there is sitting by the phone  waiting to hear the phone call from Mayo that they have a kidney or going to dialysis 3 times a week that would do anything to have a kidney.

In a couple of weeks, I will be able to go visit Mark in California. His company was able to purchase the plane tickets for me to go visit him. I am super excited and will hopefully make the last few weeks away from Mark go by that much faster.

Largest Kidney Transplant Reunion

I'm not a fungus....

Well, I have spent one week without Mark. It went pretty quickly as I had a busy week with parent teacher conferences and other events. This past week as I was speaking with Mark I was asking how his training was going. Mark mentioned that his manager from the restaurant here in Phoenix called him to make sure everything was going well in the store and was also asking if his dialysis was working out as well. He wanted to make sure that it was going well. This is the first time anyone has asked about this and even cared...usually the people think he is some type of fungus once they find out he does dialysis. Even the managers at his store in California are asking to make sure that everything is going well with dialysis. First time for everything!

I'll Love You Through It...

Just last night Mark shared with me a song that Martina McBride sang on "Good Morning America", that focused on cancer and getting through it. It was an amazing song, and in many ways touched us and was so close to our heart.  It really is love that will get Mark and I through this all.

Mark will be leaving tomorrow morning for 7 weeks of training in California. I like to think of myself as a pretty independent person, but for the last 6 years of my life Mark and I have not really been apart for that long at a time. I realize other people have dealt with longer times, I have a coworker who has her spouse who has been overseas for almost a year--and here I am complaining about 7 weeks. After all the things we have gone through, its hard to give up time I could be spending with him, but I know it is something great.

I think my life is finally stabilizing - or maybe I am just accepting things. It is rather crazy to think that in a course of a couple years Mark lost his job (and many there after due to health/time constraints), Mark's health took a dramatic decline which eventually ended in kidney failure and starting dialysis, my parents divorced, and on top of that I have had to pick up a couple other jobs to make ends meet. Through all of this though, the love between Mark and I has grown exponentially. I am so lucky to have him in my life.

Running a Marathon...

I happened to stumble upon someone who I work with at JCPenneys who has a lot more in common with us. I have spoke with this woman before, usually the "how are you today" type, but this time we got into a little more. She was born with polycystic kidney disease, where the kidneys become enlarged. Sixteen years ago she underwent a kidney transplant. The kidney was a deceased donor, and she was able to keep this kidney for 8 years. This was all while she was raising 4 children at home and went through the death of her husband. The kidney failed though. She had to undergo dialysis and at that her son donated her one of his kidneys. She has been going strong for 9 years now and her kidneys are still working at 75%. One of the questions I asked her was how she felt after the transplants, because I keep hearing how much more energy a person has after it. She also said that the next day she could have run a marathon (I wonder how many times around a hospital floor would be a marathon???) Simply amazing! Her word of advice for Mark -- "Don't give up!"

I have also been reaching out to organizations that work for kidney research, especially those for Focal Segmental Glomerulosclerosis. There is still little known about FSGS and effective treatment. I came across a group out of Pennsylvania, and were looking to expand the the group to the Phoenix area. They are wanting to plan a walk, and I am just super excited to be a part of this group.

Mark has a job!!! He just started Corner's Bakery, a small deli type restaurant. A week into his training for a cook position, an assistant manager position opened up and in a week he will be leaving for California for 7 weeks. They also know about his dialysis, and one of the other managers was simpathetic because she has a family member doing dialysis as well. Also, on the good news board, Tori was a blood match for Mark. So she will be going through the testing in the next coming weeks. Things seem to be doing well! Until next time, "don't give up"

Otter pops and Ice Cubes

Tomorrow Mark goes to get his blood drawn at Mayo to see whether Tori's blood works with Mark. Everyone keep your fingers crossed.

Mark has been doing an amazing job (except a few times) watching his liquid limit. Mark can only drink up to 800 ml, which turns out to be about 3 1/2 cups of water daily. So much of the food we eat contains water as well, so it really can be frustrating for him, especially during our hot summer. This is really hard as well because Mark used to drink gallons of water in a day. He is doing well, and this helps in keeping his levels and water retention low. Mark can always tell when he hs drank too much because his wedding band will be difficult to come off or on his finger. I know the first thing Mark will do once he recieves a transplant is drink a ton of water. Until then ice cubes and otter pops!

Another amazing individual!

So, since the last time I posted there has been another wonderful person who has stepped forward and began the process to be tested for Mark. I simply cannot believe how blessed we are to have people willing to do this for Mark. Words would never be able to explain enough our gratitude. The testing will begin next week, and the first big obstacle is to make sure the blood is a match. Keep your fingers crossed.

The Good and the Bad

I came across an article yesterday about how scientists have built an artificial kidney that could possibly one day be implanted in humans. Right now, the device is too large for implantation, but in the next 5-7 years they plan on having a much smaller device that could perform the many functions of the kidney. Simply amazing!

So I have officially become scared to go to doctors now. I am getting those doctor/dentist/eye appointments in before the start of the school year (can you believe in 2 weeks I start already!) and it has been a while since I have done these. Well, in years past I never really thought twice about regular appointments, until now. I was kind of freaking out inside while I was waiting to be called back, just thinking that the doctor would find something really wrong. I think I now associate the doctor with bad news, makes me put myself in Mark's shoes and how it must be for him to go to the doctor. I actually told the denist yesterday to stop talking about a possible procedure I may have to have because it was making me feel a bit anxious.

It will be nice to be able to go to a doctor finally and recieve good news of how awesome Mark's new kidney is working. Until then....Mark and I will freak out together! At least we have each other.

One step back...

The news is in....our neighbor will not be able to donate his kidney to Mark. It was a bit of a heartbreaker, but like always we are moving on and moving forward. It was a blessing for our neighbor though, so I suppose there was some "good" news throughout the process.

Thoughts and Prayers

My thoughts and prayers are with Mike and Rachel and her family in this time of loss.

A Day in the life of Mark

I so often feel sorry for myself, asking why everything had to happen. I do know, things happen for a reason and life hands everyone their own deck of cards. I so often get in this "pity party", then I think about what Mark has to go through, and I begin to realize how selfish I can be at times. As I have encountered friends, strangers, and even family I find myself talking about dialysis. I can explain it all I want, but until you are in that situation I will never really know what it is like for Mark.

There are moments when Mark is comfortable sharing about dialysis, but most times he doesn't like to talk about it. I know I only have to be there when he does want to talk or need a shoulder to cry on. He has made comments about how he looks around the dialysis center, and he is the youngest guy sitting in the chair. It breaks my heart a million times over. He talks about how his hand goes numb or tingles during the day because they have hit a nerve so many times while they were sticking him. He has told me that he feels tired after doing dialysis and just wants to relax.

With all this in mind, Mark has started to open up about the process. He even did his own video, which I will share at a later time about dialysis. The other day in the car Mark began to cry just talking about how the transplant surgery will be his first surgery--and it is a scary thought.

I want to leave with a couple videos. Hopefully, it will shed some light on what Mark is going through at dialysis. It is real, it is what Mark goes through 3 times a week. It is what I do not wish upon anyone. It is what makes me love Mark even that much more, because he is so strong.

Happy Anniversary

Today Mark and I celebrated our 2nd wedding anniversary. It is crazy to look back at all the events that have happend these last 2 years. On that note, I sure am looking forward to year number 3!

Great news!

We just heard yesterday that Sam is a match for Mark! This is absolutely amazing! I still can't really believe it! There are still a few more tests that Sam has to undergo to be given the "ok" to donate one of his kidneys--a whole body physical that will ensure Sam is healthy enough to undergo this surgery. This takes about 5-10 days (at least that is what the Mayo Clinic told Sam) and if this all goes through it could be a go! The transplant could be a month out from those results.

In the meantime, Mark is still busy with finding a job. He has an interview today and a couple of them tomorrow. He always struggles with how he should tell a future possible employer about his dialysis. He has been honest and upfront, but that has not worked. I have to give Mark credit, he has an enormous amount of drive and never gives up!

AHHHH, I have this crazy feeling that the next few months will be crazy! (Cross your fingers for all great test results with Sam)

Forever Thankful

I am unsure how to start this blog, because words could never explain my true emotions. Today, our neighbor Sam is showing the most unselfish act anyone could do for us, and is getting tested to see if he is a match for Mark. Mark and I are so thankful of how Sam along with Miranda could be so generous. It is one thing to say you would get tested (we have heard many people who said they would), but to actually do this is simply a blessing. Regardless of the outcome, Mark and I are so thankful. We will never be able to say it enough. 

(Sorry Sam...this is the best picture I have of you two!)

Hope

As I stated earlier in my blog, I will attempt to stay positive in all that I write. I lied! I have to admit I hate having to be positive all the time, but I do because that is what I have learned to do all my life. It really takes a lot of energy to put on the front that everything is wonderful. It is simply exhausting really. I think this week, I reached my breaking point. All the stresses in my life just seem to be piling up for me right now, and I can not seem to catch a break.

In the end, all I can do is hope for a break, a better day, a kidney!

May 10th, 2011 - Day 1

This is day one of waiting for a kidney. Mark was officially ok'd to be placed on the transplant list.

Rabbit anyone?

We finished meeting with the last two doctors and evaluation meetings for Mark's transplant. The last two meetings were educational as well. From the viewpoint of Dr. Hamawi and the surgeon so far everything from the tests look well. We will officially know if Mark is on the transplant list next Tuesday. The whole transplant will meet then, review the tests, and then give us a call to let us know. As we were in our last meeting of the day, the doctor was asking the normal doctor questions, when out of the blue he asked Mark if he ate or eats rabbit on a regular basis. How random, but I guess the immunosuppresents he will be on is made partly with rabbit blood and eating rabbit will interfere with the effectiveness of the drug.

Only a few more days of waiting. Then a little more waiting until Mark will finally have a new kidney.

We met another person who has FSGS at the Mayo clinic. He said he received his transplant back in the end of December. He has had a rough couple of months, with a case of pancreatitis. He was doing much better, and it was nice to meet someone who was diagnosed with FSGS.

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.