JohnZak’s Surgery

Two Year Checkup did not go as hoped

Last Monday (1.25.10) I went down to Riley Childrens Hospital for what I thought would be my last checkup for at least a couple of years. It was just Britnee and I going down this time. All that I had planned was to have an echocardiogram done to my chest, then to see Dr. Hoyer. well the echo went by a lot faster than last year so I figured everyone was going to be fine, and that I would be good for at least a couple of years.  After seeing Dr. Hoyer and am talking to him, he informed Britnee and I that the stent that they put in during my second surgery was shrinking more than planned. He informed us that it was nothing life threating at the moment, but the Blood Pressure difference that it was causing between my upper and lower body is what caused all my problems in the first place. And that he would want me to come back within the next couple months to do one of two things. He would either do a Heart Cath (enter through the main artery in my leg) to place a new stent inside my old one to re-expand it and strengthen it. Or they would to a series of operations and just try to expand the current stent.

After all that we went home to let it sink in. But knew we were going to do it. So my next date is set for Feb. 11th 2010.

January 29, 2010 Posted by | Third Surgery | Leave a comment

It’s all over with for now

Well the operation went great at Riley. I was in and out of the operation room in around two hours, which is a lot shorter then they were exspecting. I feel a lot better and my feet are feeling better. I am able to walk more normal and I have balance now.

Thats all i’m putting in this post, and it will problably be my last one since no one really looks at it. just a couple people every couple days. so if you want to know more just let me know or call me.

February 28, 2008 Posted by | Second Surgery | Leave a comment

We have a date

Well we finally get the call and set the date for my next operation. I’ll be going to to riley childrens hospital on Feb. 27. They are going to use the bollon thing to exspand my aorta. And then they are going to install the stint. It will be an overnight stay, just in and out. So hopfully everything goes ok.

February 14, 2008 Posted by | Second Surgery | Leave a comment

Second (Six Week) Checkup ~ New plans for second surgery

Last Thursday I went to Lutheran to see Dr. Scavo for my six week checkup. I really can’t believe it has been six weeks since my first surgery. I guess when you don’t do anything except lye around the house, times goes by slower then you can ever imagine.  When I went in at 7am, I first got a blood pressure test done for my legs. They attached blood pressure cuffs up and down my legs, and even on my big toe. And half and hour later we were done.  After that test I went to the other part of the hospital and say Dr. Scavo. While with him we got the results and it turns out the pressure in my legs in 100 percent normal. But the pressure in my feet are only 60 percent of what they should be. He didn’t even look at my chest once. After he got the results of my test and some other stuff, and my mom and I talked to him for awhile, he brought up an idea about changing the plans for the next step. He wants to change the date of my next surgery from April to ASAP.  He is hoping that after my descending aorta is fixed, the pain in my feet will go away, but there is no guarantee about it.  The reason he wants to move my surgery up instead of waiting until I am stronger and gain more weight is because there is this operation called a stint. And that operation is not a surgery at all, so they will not have to cut me open, and put me on bypass. This causes it to be a lot less risky.  The only thing we are waiting on to see if I am going to do this operation, is that it would cause me to have to go to Indianapolis to have it done. And the doctor down there is still deciding if he able to do my case, and if he wants to. But anyways, as soon as my appointment with Dr. Scavo was over, he went straight to the phone and called the doctor in indi and called in some favors to get him to even look at my files. So Dr. Scavo faxed over some of my files right away to indi, and used FedEx to ship ALL my files down him.  Now we are just waiting for a phone call any day now on the decision. If it is a yes, then I will be going down to indi. And we should know by the end of this week.  Oh and by the way, a stint is just when they go up the main vain in my leg, up to my aorta, and install a small device that will expand and expand the narrowing in my descending aorta. I’ll post an update as soon as we know something. Please pray that the right decisions are made.

February 11, 2008 Posted by | Second Surgery | Leave a comment

First checkup~ 2-5-08

So I went to see Dr. Brown, my current cardiologist, today and it went ok I guess. He just checked my stats, and my breathing. You know the cardio stuff. My blood pressure was really low, and I told him how I have been becoming lightheaded sometimes, so Dr. Brown changed up my medication some, and is starting me on a weaker form of Altace for my heart. It won’t lower my pressure as much, which he thinks will be safer, and it might pump more blood to my feet and might help them to heal faster. And the best part of the new medication is that it is only $4. Now both of the meds that I have for my heart are under $10. Which is a good thing because he said I might be on them for awhile.  I am suppose to meet with him again in three months, but it is dependent on when and how my next surgery goes.

February 5, 2008 Posted by | Recoverery | Leave a comment

New meds are working :) ,and three weeks later.

Well Monday I received a new medication called Neurontin, its another med that is suppose to help with the nerve pain, and slow my nerves down, and like the Lyrica that I already have, the Neurontin took around a week to kick in. I can really feel the difference now. At night I do not get the killing, shocking, wanting to die pain like I was having before. All the pain I have in my feet now is tolerable. I am still not receiving more then three house of sleep at night with the Ambien, but I was just able to get an hours nap in this morning. So that is always a good sign. The most pain I feel now is when I walk. There are spots on my feet where it feels like someone took a cheese grater to it when something lightly touches it, or if I have pressure on those spots to long. But all in all they are starting to feel better. And like always I hope they keep getting better and don’t start hurting again like last time. And after three weeks with that much pain, I will be ready for anything. Some people are saying that I will be lost without it, but I know that is not true lol. The only thing that has ever felt worse is the CT scan that they gave me when I went into the ER and the dye that they use went into the tear of my aorta and caused me to try and craw out of the scanner. It’s funny now that I think of it. 

My mom and I also went in and I applied for Medicade so please pray for me that I get approved. The lady that we worked with said it might take anywhere from a couple of weeks to a couple of years for my case. I guess they only like working with people that have a lifetime disability, and since I will be better in around a year, they might not want to help pay for my bills.

And the last thing is that I’m going in to get some blood work done sometime today for my appointment with Dr. Dechner next week. And I also have a couple of other appointments with other Doctors sometime next week also, but I am not sure which ones, I’m still meeting some of them for the first time. 

February 1, 2008 Posted by | Recoverery | Leave a comment

I think thay are starting to get better

So what all happened since my last post. Well since last Wed. it sometimes feels like my feet are starting to become more normal. But I still have times when I can’t stand the pain at all. It seems to be fine during the day, but then around eight my feet just start burning, stinging, shocking, and they are just in every kind of non-stop pain you can think of. So I have not been sleeping at all most nights for the past week. A couple of days ago my mom called Abi and she talked to Dr. Dechner, and he called into Wal-Mart and got me a prescription for Ambien. My mom calling Abi, to her picking up the prescription all happened within an hour. It’s great to have a sister that works with your doctor. The Ambien helped me sleep great the first night. But then the next night it had no kind of affect on me. So once again I was up all night. And it’s been like that since.

            Yesterday morning at church Vi Delagrange came up to me and asked if I have ever thought of being anointed with oil in front of the church, it crossed my mind once awhile ago, but I never thought of it since. So during one of the breaks, she talked to Pastor Don, and he said he would do it that day. So during the service he came back to me, I always sit in the back now in case I have to walk around or leave, and did a prayer for me and anointed me. As soon as he did that the pain died down until I got home. It was the first time I was able to sit still since I came home from the hospital. The even better thing that happened is that the severe pain that I normally have at night, I had that afternoon. I know that might not sound like a good thing, but that night I was able to control most of the pain because it was not that bad, there is a reason for everything in Gods plan.  But since the extreme pain started during the day, we tried to do something about it, so my mom called Jayne Numbers, a massage therapist and friend of the family, and I went in to see her for several hours. While there she worked mostly on the back of my spine, and now we know that is where the problem is because at one point during the appointment all my pain was gone, and I was in complete bliss. But then she stopped and the shooting pain came back real soon. Jayne told us to take two tennis balls on put them into a soc and then lay the back of my head, by my spine, on them. It is suppose to manipulate what she was doing to stop the pain. I couldn’t get it to work though. So last night the pain was very weak, but I still could not sleep. I took a Ambien, but it only worked for an hour before I was wide awake again. So we are back to not knowing what to do. But my feet are feeling different some of the time, so they might be becoming a little better.

January 28, 2008 Posted by | Recoverery | Leave a comment

Two weeks later

Well it has been two weeks since I’ve come home from the hospital and my recovery is going great. I am getting out of the house a lot more, mostly to Wal-Mart to walk around while Britnee shops. I have even been able to go out to eat a couple of times, but it is hard to sit through a meal because my feet are still bugging me a lot, but the pain has moved mostly to my toes and the end of my feet. The only time when the rest of my feet hurt is at night for some reason. And when they hurt at night, it’s the worst pain that I have ever felt. And the pain pills that I have don’t really help. This causes me to loose a lot of my sleep. But according to the doctor, it shouldn’t last more then another week; I really hope he is right. I am going to see Jayne Numbers a couple times a week which helps for several hours. And it seems to be helping get rid of some of the pain altogether. She also wants me to see Dr. Bull, which is the main chiropractor where she works. She believes that I have two disks in my lower spine that are to close together, and that if I get that fixed then it might loosen up my nerves some, and stop most of the pain. I hope she is right.

January 23, 2008 Posted by | Recoverery | Leave a comment

From the Beginning

So I’m guessing a lot of you are still wondering what all happened to me. I’m still figuring it all out, but I’ll fill you in on what I know. This first part is from a journal that my mom and sister Abi wrote on the first day. It all started on December 27th. The day started out normal. I got off work around 7am, and came home. I felt great at that time, and didn’t even think of anything being wrong. After I got home I went to bed until around 6:30 that night. When I woke up I still felt fine. I ate some supper and just lay down on my bed to watch some TV before work that night. I sent Britnee a text message around 8pm asking how dinner with her mom was going. I was still feeling fine at this point. While I was waiting on a response at around 8:30 I started having really bad chest pains and started having trouble breathing. So I went downstairs on told my mom. And within 5 minutes I couldn’t walk, or even stand up on my own. At that point my mom decided that there was something really wrong with me that wouldn’t just go away. So she decided to take me to the emergency room. It takes an ambulance around 25 minutes to get to our house, and it only takes us 10 minutes to drive to the ER. So my mom just took me in my truck. I was in so much pain that my brother Jake, and my dad had to help me out to the truck, but the pretty much carried me. I was still awake at this point and just remember yelling from the pain the whole way there. We got there in 12 minutes, and my mom pulled up to the Emergency room doors. They put me into a wheelchair and took me inside and started quizzing me on a whole bunch of stuff. I don’t remember one thing that they asked me. But then my mom came in, and they took me into one of the emergency rooms.

Once I was in the room an ER nurse started checking all of my vitals. (Temperature, blood pressure, pulse, heart rate, and respiration.)  My blood pressure was over 170, with 120 being normal. At this point I was starting to go out of it some, I stopped taking in who was around me, and just kept yelling. I couldn’t tell you one thing about the room I was in. But I do know that my sister was there because she was making sure the nurse was doing everything right. (She is a surgical tech. and actually works in surgery with all the doctors that worked on me.)  After they checked my vitals, they still had no idea what was wrong with me. After that they took a blood sample to check for anything that shouldn’t be there. After they sent the blood away they took a chest x-ray, and then a CT scan. To do the CT scan they have to inject a special dye into me, this was the last straw for me, it caused me so much pain that I was clawing my way out of the scanner, forcing my way out of it for they would stop it. And I guess I was yelling so loud that they could hear me in the waiting room, which was way down the hall.

I don’t remember when this happened so forgive me if you know it’s wrong. But sometime while in the ER room I heard Britnee and her mom come in, and that was one of the biggest relief that I have ever felt. I know I looked really bad, and was flopping all over the place in pain, but as soon as I held Britnee’s hand, it just all seemed to get better.

After all of that they took me back to my ER room and Dr. Cassidy, the ER doctor on duty, pulled my mom, dad, and sister off to the side and told them I had an Aortic Dissection. With my sister being the only one who knew what that was, asked the ER doctor to contact Indiana-Ohio-Heart from Lutheran hospital to do the surgery, since she works with them and knows they would do a good job. Abi even called Dr. Dechner and asked him in person to do the surgery, but he was out of town. But Dr. Dechner did call Dr. Scavo and asked him so come to Parkview on work on me. While they were calling in the doctors, I was transported to the critical trauma room in the ER, after they got it all set up. By this point I have no memory of what happened for the next nine days. I don’t know if I passed out at some point while they were moving me, or if its because of the drug’s they gave me for I wouldn’t remember it.

Just to let you know, the aorta is the largest blood vessel in the body and carries oxygen-rich blood away from the heart to the rest of the body. In an aortic dissection, there is a tear in the aorta, which gets progressively worse. Blood surges through the tear and separates (dissects) the layers of the aorta. Chest pain, often accompanied by pain in the back and between the shoulder blades, is the key symptom.

Once I was in the new room they got me all hooked up with two IV lines, and all the monitors. Soon after they got me all set up, I got sick and started throwing up all over the place. Britnee had to leave the room at that time. But I guess I was still awake, because my sister said they asked me what I all ate. During all this time, all of my family, and Britnee’s family were waiting right outside the trauma room. All my brothers, my cousin Dawn, my mom, dad, Kati, and Abi all stayed in the room the whole time. Mark, my brother in law, was there also, he is the one who brought my brothers up once they found out I needed surgery.

Once Dr. Scavo got there he explained that surgery was the only real option for me.  He also told everyone that around 10% of people die from this. But he also said that I was young and that I have a better chance of doing just fine. They all said their byes to me, and then the nurses took me to the OR. I don’t know if this next part is true, but it’s what I’ve heard. But with my blood pressure being so high. And with my Aorta being in such bad shape, being thin and all. When they first started the Surgery I was down to a 10% chance of living. And something that kept me alive was a small amount of scar tissue on my aorta from where it was torn a little before. I’m guessing from track or cross country, since I remember having really bad chest pains while running once. But before they could put me onto the by-pass and the ventilator, I should have bleed to death. But that small amount of scar tissue held me together long enough for them to get me all hooked up. So running might have saved my life.

Everyone was sent to the surgical waiting area, which there were around 30 people there for me at that time. My dad joked around and said they were all Amish because of all the people they had there. The Amish tend to have their while family and extended family there for everything. (Just an Amish Joke.)

They started my surgery at around 11:30 that night, and finished at 5:30 the next morning. My whole family said it was the longest six hours of their life. During all of this, Pastor Bill from Grabill Missionary, Pastor Don, Pastor Troy, and Pastor Phil from Central Christian, all came up. So I was well covered in the pastor department. During my surgery the OR nurse came out 3 or 4 different rimes to give my family an update. Once when they a6ually started the surgery, once to say I was going on by-pass, once when I came off of by-pass, and then when they were done. Then Dr. Scavo came out to tell them, but mostly Abi, about the surgery and how it went. He said it was a miracle that I was even still alive, (you have to love it when your surgeon says that after spending six hours inside of you),  He said that my Aorta should have burst as this as it was. When he hot in my chest it was much worse then they could tell from the CT scan that they took earlier. Dr. Scavo said I was very lucky.  While everyone was waiting for me to get moved my perfectionist, John, who ran the heart-lung-bypass machine, came out to talk to Abi and assure her the surgery went very well, he also said that Jennifer Hockemeyer said hi, she is my friend Kurt’s sister. After all that I was moved to a room in Intensive care. Ok this is the end of the first day, and the end of my mom and sister writing in a journal. So everything after this is what I was able to pick up from everyone.  I’m still not sure what all happened, I’m not even sure I want to know. But I’ll fill you in the best that I can.

This next section is about the nine days after the surgery when I was sleeping. So I’m not sure what order any of this happened in, but its just some of the stories that I’ve heard since I’ve been awake.  I guess right after the surgery, I came down with a really bad fever.  And one of the nurses had me completely drenched in ice to lower my temp.   And at one point I had a really bad infection in my lungs, and they drained out over a quart of liquid from them at one point. Those two things are why I was drugged into sleeping for so long. Every day I had around 20 or more people visiting me. And I became well known to all the nurses. All the doctors from Indiana-Ohio-Heart kept on visiting me during my whole stay at the hospital.  One reason for that was because of my sister. And another reason is because I am such a special case. They have never had anyone as young as me have this operation done. And they still have not figured out the exact reason that caused it in the first place.

One good story from when I was sleeping is New Years Eve. My mom, Britnee, and Michelle (Britnee’s mom) were all in the waiting room, when the nurse on duty that night came out and told them to get back to my room. While there Britnee made me a paper hat, and then they all tried to turn on the TV to see the ball drop, but they were all to short. Even the nurse. So they had to go and get someone else to do it for them.

Then on January 4 they finally decided to wake me up. I don’t really remember much about waking up. But I do know that I started freaking out because I had no idea what had happened. And I had some really weird dreams so I am not even sure what is all real. But when I woke up I was still on the respirator, so I still had the tube in my mouth, so I could not talk. This freaked me out even more because there was no one there but the nurses. At this point I was still a little out of it from all the drugs they had me on. So I was hallucinating and freaking out even more. I was in no pain, just discomfort.  They woke me up in the afternoon. And then either late that night or early the next day, I think it was the next day, they started the process of removing the respirator. This involved me sitting up for two hours to make sure I was awake enough. Then they shut it off, and I had to breathe on my own through the tube for another two hours. Then they disconnected the tube from the machine, and I had to wait even more. Then after around six hours of just sitting there they took the tube out of my mouth. I had a little trouble breathing, but by that night I was able to breathe, as good as ever. But I was not able to form words in my mouth for at least a day and a half. So I was still unable to talk.

I was then put back into my room where I was for the next two days. And that’s when I started getting news on what really happened. People came in and visited me, and my dad stayed the night in the waiting room. Britnee was there every day by my side also.  The nights in that room were the worst in my life. I was lucky if I got three hours of sleep. I had to wear these boot things that kept moving my legs every ten minutes, so that kept me awake. And the nurses kept checking up on me when they weren’t in their break room fooling around and yelling with their friends. And I just slept for nine days, so I was not very tired. So I had a lot of trouble sleeping the next couple of days. After I was able to move some on my own, and was breathing and talking more normal, I was moved into a regular room in the heart trauma ward. Which it turns out I was the youngest one by over 25 years. When they moved me is when they found out that I could not support myself walking, or even standing up. So I was put under bed arrest again. But I was taken off of the bed pan, and was able to go to the bathroom with the help of a nurse. After two days of this I tried going by myself, and ended up falling, which caused them to take more x-rays. And this continued until I was sent home.

While in the heart trauma ward, I had tons more visitors. And I soon became the most widely known patient on that floor too. Even when I got moved to my new room I still did not get any sleep. That is when my legs started to bug me, and every two hours at night a nurse came in to check up on me and give me tons of medication. During the day I just sat in my bed watching TV. And talking to some of the people that came in early. And I got the chance to finally meet some of the doctors that worked on me. Then on January 10th, 13 days after I went in, the doctors started to say that I could go home. There were four of them that had to release me before I could go. And then by that night I was able to leave and go home.

When I got home I was still a little unstable on my feet. So I slept on the couch on the main floor, that way I did not have to use any stairs. Which I was to weak to do anyways. I am on two different medications for high blood pressure, which I take twice a day. I’ll be taking those until I go back in to so Dr. Dechner in the middle of April. I had my staples removed on January 14th, which is four days after I left the hospital. I have had no chest pains since I woke up from my nine days, so I am grateful for that. And the scars are going to be great. I’m just telling everyone that I got into a monkey knife fight. Lol.

But anyways, my recovery is going great. I have now been home for one week, and I am able to walk, do stairs, and do almost anything on my own. I am sleeping in my own room now, upstairs. And am starting to get more sleep every night, I’m up to five hours now. I went to see a neurologist on January 17th, and he gave me a month supply of a new drug that will help with my feet.

Now my feet are a whole other story. Ever since I was transferred to my new room in the hospital, they have been bugging me one way or another. At first they were completely numb. And since then they have been going through periods of different kinds of pain and discomfort. At first the pain medications that they gave me for my chest stopped the pain in my feet long enough for me to fall asleep. But now that pain has changed into a shocking feeling. It is like when you test a nine volt battery by putting it on your tongue, and you find out it’s a brand new battery. Well it is like that constant feeling on the bottom of my feet and toes. It’s like I’m always getting shocked. And walking does not stop it like it did with the pain. So I have this new medication that slows down my nerve impulses, and as long as I keep pressure off of them, they don’t bother me.

The rate I’m going the pain should be gone within another week. Hopefully it is, because I’ll be able to drive by the 24th if my feet stop bugging me. The next step for me is to go in for a couple more checkups in February. And then on April 1st I have to go in for a detailed CT scan which Dr. Scavo, and Dr. Dechner will go over and decided what to do about my descending aorta. Which is the back side of it. I will either have to have surgery and have it replaced. Or they might be able to go in with a balloon type thing and just expand it. But they usually only do that in infants, and are not sure it will even work with me. So there is a great chance that I’ll be getting the surgery.

This is all I have for now. Hopefully I’ll get my sister, mom, and Britnee to update this some and fill in more of the blanks. I’ll keep you posted on what happens in April. Thank you for all your prayers and support for me and my family. This has showed me that I have more true friends then I could have ever hoped for. And that God does answer prayers.

January 20, 2008 Posted by | First Surgery | Leave a comment

I’ll keep you posted.

That is most of what I know happened. I will keep you posted on anything new that comes up, and about my next Surgery in April.

January 20, 2008 Posted by | Recoverery | Leave a comment