Stephanie's Heart Valve Journal

Stephanie just called me to let me know that she has escaped the hospital. She is so happy. Her arms aren't so happy thou. She told me that she was cleaning up her room before she left, got the sheets off bed and straightened things up. Just cant believe that, oh to be young again.
She told me two of her kids were planning a welcome home party, but they didn't have the food for it. Stephanie told them to get the good ole twizzlers out. She has found out that the second surgery is much worse than the first one. Just something to keep in mind.

So my job here slows down. Her computer is still down as far as I know, so I will be putting things on here when she can call or she can get to the library to use that computer.
So I guess that's it for now. Just remember if you are going into surgery, you can do it as she did it again. Hope everyone has a speedy recovery as well.
Linda and Elsie for Stephanie and Thumper

Just talked to Stephanie tonight. She continues to improve. Just waiting for the blood levels to be where they are suppose to be. They are slowly getting there. Today she was able to see her 3 kids and they were all able to go to the roof. Of course they all wanted to drive Mommy in the wheelchair.. She walked the halls 4 times today. The nurse said she is doing really good in walking. Her arms are giving out with new IV'S and samples. That's about it for today. So everybody out there waiting for surgery just remember you can do it.Waiting is the worse part.
So until later have a good night
Linda and Elsie for Stephanie and Thumper

The limo is here going to surgery

Stephanie and Mom having some nice time before surgery

Just talked to Stephanie this morning. It took over an hour to get ahold of her. Said she has been pretty busy. She finally got to get cleaned up some what now that everything is off her. She and her husband walked the halls twice around already. The only thing holding her in the hospital is her INR needs to be better. Her Iv's aren't working like they should any more so they have to put in another one and her veins have decided to leave the premises, not to be found anywhere around. So just before I hung up with her the nurse came in and told her that they will put in a pick line but they are going to take her some place to do this and numb the area up so it will make it a lot easier for her. Her skin is getting quite irritating with all of the needles and tape. But other than that she is doing great.

She sends her love to everyone out there and wants everyone to know that if she can do it twice you can do it.
I am going to try and upload some pics today and try and get them on here. So until later everyone take care have a wonderful day and hugs to all.
Linda and Elsie for Stephanie and Thumper

I talked to Stephanie on the phone today. She continues to improve with Thumper. Her nurse says she sounds a lot better and getting back to normal, as he saw her before surgery. They are going to be giving her more heprin as her INR is still to low. They want that stabilized before she goes home, so she might be there until Monday now. Her walking is getting better by going longer distances at a time. So I guess that's it for today. Will talk to her tomorrow. Just remember you and do it and I did do it again.
For Stephanie and Thumper Linda and Elsie

I got back home last night just in time for the weather changing. Did not want to get caught in that. I had my husbands truck as my car had an issue that had to be addressed. When I drove up there had high wind warnings in the mountains. So I was very proud of myself getting there.

Anyway this has been a very big learning experience for me. Cleveland Clinic is HUGE. Took 20 minutes just to figure out that was a garage to park in and not office buildings. lol.

The whole experience just opened up all the thoughts I had of my own experience 2 years ago. Watching Stephanie going in for surgery and going to the icu, just made me think back . Stephanie was there for me now I understand why it was so hard for her. Seeing her in icu was very emotional. I tried so hard to hide it but it didn't work. So when you have been on both sides of the fence makes you understand what care givers go thru, but when you have experienced the surgery it is so much different.
Stephanie got a new kind of mechanical valve, It is called a top hat valve. Completely new. I had to google it. Looks pretty good to me. Dr Stephanie Mick did a wonderful job on my Stephanie. God was there to help. She is recoverying real good, but she is still young. I have been posting on her sight and will as long as I have to.

Just remember you can do it. And I have found out like we all complained about waiting for surgery was the worse, but when you have been there and understand more than a lot of people, I think waiting for your loved one to come out of surgery is probably the worse waiting.
So until later.
Linda and Elsie

Stephanie rested pretty good in her room but is still in pain. She keeps loosing her new buddy the pain button. She is so afraid of coughing as she feels her infection wants to finish up. Today will be a day of getting back to life. She just had her foley taken out and still has 2 drainage tubes to go. They have already taken one drainage tube out. Today she will be getting out of bed. The doctor said if she does everything that she is suppose to be doing she will get to home hopefully on Saturday,

Well this is going to be very hard for me as I have to leave today to go back home. It is suppose to start snowing tomorrow and I don't want to get caught in it. Her valve is a top hat valve. They said it looks like a top hat and is the newest. So I will be posting until Stephanie can but I will have to call and get updates, but I will do the best that I can. We send our love out to everyone and remember you can do it and she did do it again. Hugs
Linda and Elsie

Yesterday was a very long day. I was able to see her in ICU. She was in big pain. Second surgeries I have found out are worse. She has 3 drain tubes Today as the day goes on I can see a big change in her. Drugs are wonderful, but she hasn't been hitting her button very often. She shares the same badge of courage as I do the full cut. Elsie is happy to have a little cousin. Stephanie has decided to name her new valve Thumper. Tomorrow they will be getting her out of bed to start walking. I will be going back home to SC tomorrow, but I will continue to post for her as I can until she can. She and I send our love to all of you. And she thanks everyone for all the prayers. God is so good. I am going to be reading all of your messages to her. So until Later,
Linda and Elsie

Stephanie is now out of surgery. She went at 815am and the first update when they started working on her heart was at 1030. At 230pm we finally say Dr Mick, She said everything was fine and she has another mechanical valve. She used a different type of valve that is a little deeper and should work a whole lot better. We are just waiting for her to be in ICU right now. Hope I can handle it. Now I know how Stephanie felt when she went thru my surgery. It is harder when you have already experienced it. Hope I never have to do this again. So until later I think Stephanies new sign will be I did it and so can you. Just remember you can do it to and the waiting on this end is just as bad if not worse than waiting for surgery. Now on to recovery and I know she can do it and so can everyone else. Hugs to all.
Oh Elsie doesnt have a little baby sister. But she is content wit a cousin..

Linda and Elsie

They started working on Stephanie at 815 this morning and we just now at 1030amm got an update that the surgeon,Dr Mick, has started working on her heart. So the next 3-4 hours will be very long. Until later Keep the prayers coming God is in with the surgeon guiding with his hand. Hugs until later
Linda and Elsie

They took Stephanie up to surgery at 635am. She was in good spirits, laughing the whole way. She has been in a step down unit while being here, and she was the most lively person there. As the day went on she kept getting more silly. It was funny. She was moon walking with her IV friend. They told us that it would be about 4 hours. So when I hear something new I will let you all know.

It has been rather emotional for me as it has only been 2 years. It was bringing all those memories back. So I will be glad when this day is over with.

So all of you out there waiting for surgery you can do this too. Prayers to all. And as Stephanie says you can do this or better she will have to start saying I did this again. Hugs to all and I will let keep you posted.

Stphanies Mom here. Tomorrow is the big day for her surgery. She will be going in as far as we know at 7am. She is a little anxious today and joking with everyone. Bet she doesn't do it tomorrow. And she says she hasn't run away yet, but how far can one get when she is hooked up a heprin IV. We have been enjoying the time we have together right now. Cleveland Clinic is a huge and beautiful place. I thought I was walking into a big fancy resort. We are now going to go for a little fun and check roof top. Might have to go shopping for a frock as they have dress and shoe shop here. Oh boy. Nice to look.
Hope everyone is doing good and as Stephanie says You can do it.
She says PS she wants to put a sign on her door to keep all the vampires away. Hugs to all from both of us.
Linda and Elsie

Ok folks, looks like my job is starting about now. I talked to Stephanie on the phone today and she asked me to post something here for her. She wanted everyone to know that today was her last day for the dreaded lovenox shots that she has been taking getting ready for her surgery. She is very happy about that. Her computer is still down and it is hard for her to get on as she has to go to the library. She said she will be glad to get this all over with once again. I will be leaving my house in SC to go to the Cleveland Clinic on Sunday as that is the day she will be admitted. Her surgery to replace her mechanical valve with hopefully another mechanical valve or else a cow valve. She has already named it Elsie Jr. Gee my Elsie just might have a little sister. My prayers are with her and everyone else. I pray that her surgery will be the lesser of two possible outcomes as they may have to make her aorta larger. That is more invasive and a longer time out. Gee I never thought I would be doing this again. It is becoming a habit. She and I are praying for all of you out there and for a speedy recovery. As she keeps saying "I can do this"
So until Sunday when I can see my daughter unless she has something for me to share Elsie and I will be saying good night.
Stephanies Mother Linda Hillman

So anxiously waiting to get this over with. Lovenox shots are no fun. Poor tummy is all black and blue. : ( Saw my caridologist today and he says my lungs still sound crystal clear and since Im slowly feeling better to call and get my surgery rescheduled. So now I will be admitted this Sunday the 2nd and surgery will be the 4th. Friday is my last day for the lovenox shots
Hope everyone is doing well. Praying for everyone still

Well should be in surgery today. But caught an upper respitory infection so as soon as Im all better they will get me rescheduled. They put me on lovenox till I can get in there so I think it will be right away. My computer crashed so its been hard to get on a computer.
Im sure my mom will update my page as mush as she can like I did for her.
Hope everyone is doing well.
God Bless and Good luck!
Im thinking of everyone and sending lots of good prayers your way.
We got this

Haven't had the chance to update till now. Yesterday (Thursday) had a bunch of tests and meant with my surgeon. Did not know I was going to be poked 3 different times with needles. Yuck! First they did an EKG then my Xray. Those were simple. Then I had blood work. Thought I would be poked once and was twice. Yuck! Then I went to my cat scan. They had to put an IV in. Plus they had to lower my oxygen level a little before they started. Then when the cat scan was done she took my blood pressure and it kept getting lower. It got as far as 93/ something. I always forget the bottom number. So surgery day should be fun with my blood pressure.
Anyways, After all that I went and meant with the surgeon and her team. Everyone was very nice. I am to stop my blood thinners on the 15th. That's starting to make my nerves a little rattled. Then on the 19th I report to the hospital. When they will start giving me hephorin (not sure how you spell it sorry). That will be in my IV to keep my blood from clotting. Thank goodness for no lovenox shots. Then the 21rst they will start surgery early.
The surgeon seems very nice and she was very knowledgeable. She's a little unsure which new valve she wants to put in. She is trying to prevent me from having surgery on my heart again at least for as long as she can. So she double checked with one of her specialist while we were there and came back and says she is going to go with the mechanical valve. If she sees she does not think its going to work then she will have to do the cow valve.
Now why am I having problems with all this scar tissue? It could be from my last surgery they did not put it in straight enough and its tilted a little and all the scar tissue is building up all around it. We are hoping that is the case. Now the last surgery the doctor said he had a really tight fit getting this last valve in. So if the doctor sees when she's in there that she needs to enlarge the aortic root she will. That will help if I ever have to replace the valve again. But its more invasive, longer, and riskier to do the enlargement. We are all praying she does not have to go that route.
They may also try and use my old drainage tube scars from last surgery but they may add one more so I will have 3. :( No fun.
So to end my long journey story. Im now a little more on the nervous side. Trying to stay as busy as possible to keep my mind off it. Sitting and not doing anything is not really good right now. So Im praying to God I still got this.
I know I do. Its just nerve racking after all that talk with the surgeon. But I believe I am in good hands.
Oh on a funny note. My doctor says I can do whatever (other than heavy lifting) until I get to the hospital. Then everyone gets to tell me what to do. I said do I get paid to listen? she kinda looked at me funny. I think she knew I was joking.
My other funny thing while I was there. When the lab lady was doing my blood work she said I will have to be poked twice. So I told her I was from a different kind of species. Im an alien. You will have to take it from my feet. She started laughing and said we would be here a while if that was the case. lol
Good luck to everyone!
We got this and so does God.

Been so busy. Trying to keep up with everything. Letting family know and trying to get everything done can be exhausting. Anyways, Thursday I will go in for a bunch of testing.
They are going to do a chest xray, then blood work, then a cat scan, then I will meet the surgeon and her team. My surgeon will be Stephanie Mick. According to her page she looks like she will be good and I know my cardiologist wont set me up with someone who is not. Then on the 15th I have to stop all my meds. Including my blood thinners (nerve racking0 and I have to admit myself to the crazy house (hospital lol) on the 19th. Surgery day is the 21rst.
Kids seem like they are getting a little emotional already. :( But they are excited we are keeping them home surgery day.
Talked to my doctors nurse about those two sharp pains the other night. She says the doc just wants to keep a watch on it. If I have more to let them know. Thankfully none yet. Knock on wood.
Well off to go get some more done.
Good luck to everyone and God bless.
We got this.

Well today (Monday) I sit and wait to hear the phone ring for the call that I did not hope to get till I'm at least in my 80's. lol Age was probably pushing it.
Didn't think I was going to make through the night last night. I was sitting down watching my Sunday night ABC TV shows and within 5 mins. I got to really sharp pains in the right side of my old incision. I was almost afraid to take a deep breath for I have been doing that a lot. That was the first time I experienced those pains. Glad I haven't felt anything since and I am still here. Will probably call my cardiologist this morning sometime just to inform him of those pains.
On the good side Im slowly getting things accomplished before surgery. I didn't get everything done in time of my last surgery. But Im determined this time. We will see how it goes.
So far Im glad my middle child is doing so awesome in school with all A's and one B and I will not have to have parent teacher meetings for her. My son is doing good and wont have to worry till November and my oldest Im waiting to hear for the big IEP meeting. Got my sons Halloween craft treat done for his school party and the girls can't be done till the party and they are so easy to make that they will be able to help their dad. :)
So slowly making progress before surgery. Through out the week kids and I will probably play some UNO that half the time they beat me at. lol and color and some things. Im working on getting them a picture of mommy to put it their homework folder so if they miss me while Im in the hospital they will still have me near somehow. :)
Thank you to everyone for all the prayers. I appreciate it. I will continue to keep you all in my thoughts and prayers also. This is a great site to come through when your facing heart surgery. We should all be thankful for Adam and his site.
As I tell my mom I got this. Did it before will do it again. Still young enough to recover quickly, which makes my day brighter. :) You got this too. The hardest part is waiting. Don't let negative thoughts get you down. We are all in Gods hands and he will take care of us.
God bless you all
We got this

Stephanie

Hi everyone! Well this Saturday morning the phone started ringing and it was my cardiologist. I was shocked. Didn't expect any doctor calls on a Saturday morning. But then I thought this cant be good. So he told me that he had another specialist look at my echo to get another opinion also. The specialist has found that I do not have a clot around my valve but its scar tissue. That I think has been building up the last couple years because my INR levels are always up and down. He said they are worried that if any more scar tissue builds up that my leaflet that is already not working the greatest will get totally stuck and then I will be in a real pickle. So he said that I am in serious condition and to expect surgery within the next 2 weeks instead of at the end of the month.
I knew calling on a Saturday morning would not be a great call. So now Im scrambling trying to get everything done I need too. Parent teacher conference meetings, IEP meetings, my daughters doctor apt coming up. All kinds of stuff. He has not restricted me from anything other than lifting heavy items. But if I were to faint then someone would have to call 911. So Im trying to be really good. Don't want to go there.
I did get a little dizzy tonight but nothing to bad. I just sat myself down and tried to relax. You know there is something going on in your chest when you are always trying to take deep breaths to catch it and you just have a mild burning feeling. Thankfully nothing I am crying over. More annoying than anything.
I always tell myself that God only puts us through these things to show us how strong we are and are scars remind us also of how strong we are.
We are all in good hands.
My tip of the day. Always keep your INR checked. And never doubt yourself if you cant breath going up a hill and your chest burns. It may not be lack of exercise.
Good luck to everyone! You are all in my thoughts and prayers.
God Bless!

Stephanie

Hi everyone! It's been a while since I have been on here. It's hard to get on sometimes when you have 3 children to take care of and they keep me on my toes. Well I had my partial hysterectomy done in May. I was a mess. My cardiologist was awesome though. Even though my hysterectomy was not heart related he came and checked on me every day till I left the hospital. When he had to reverse my Coumadin I begged him to let me eat some broccoli with some cheese. Never did get any. Instead I got a shot full of vitamin k. Right after my surgery I got right back on my Coumadin. Happy to report the partial hysterectomy worked. I have no more pain in my stomach right now. Feels great.
Shortley after my surgery I had my next follow up with my cardiologist to see If the pressure has gotten any worse from when I saw him a year ago. He did my echo and found that the pressure has gotten worse. He then scheduled me for a T E E test. He could not find why my pressure was so high so he scheduled me for a cat scan. He then called and told me that I have a clot or lots of scar tissue building up behind my mechanical valve. That its hard to tell because its so dark behind the valve. So he decided he wanted to see me again in December to check things again because it was not crucial yet. He said by then we could be talking about replacing the valve by the end of the year.
Well about a week ago I was walking up to my kids school to get them. Its good exercise. But I have to go up this hill and that day I got up the hill but I could not breath. Plus my chest starting burning. I was almost in tears. So I called my cardiologist and he got me in on Friday afternoon and did an echo.
He looked it over came in asked me some questions then crossed his arms and looked at me. I said I know just tell me I'm paranoid and I need more exercise and send me on my way. He said I can not do that because your valve has stopped working. It is not opening and closing anymore. Plus I have a new small leaky valve.
I said well IM glad to hear I'm not losing my mind like I thought. So I'm suppost to wait for a phone call on Monday from the Cleveland Clinic to see when I'm scheduled to go there and meet a surgeon. He is talking surgery by the end of this month. If I faint or my breathing gets worse or anything I'm suppost to call immediately.
He said it will probably be another minimal small surgery like I had before. He said they could give me another mechanical valve but I would probably be better with a cow valve. Its up to the surgeon I guess. If I get a cow valve I will have to name mine Elsie JR. Since My mom's is Elsie. lol

I saw on my mms (Linda Hillman) page some of the prayers. Thank you to everyone! I wish everyone well and good luck with their surgeries and recoveries. I will keep you all in my prayers also. So glad I still have my heart pillow from my surgery 5 years ago. I will be getting her out and holding her tight for a while. Thought I was done with her for a while. Guess not.
Thank you! Let God watch over us all and cover us with his hands.

So I was reading moms latest post on how well her and Elsie was doing and thought I would try and get a journal in since I havent done much yet.
It will be 4 years in March since I had my aorta valve fixed. Heart is still sounding great. Thats the good news on my end.
I am learning though through these past 4 years that anything that could arise in the future after being on blood thinners you should get taken care of before having heart surgery.
April of 2011, 2 years after heart surgery I found I was anemic. Had to have a small procedure done. It fixed the anemic problem but now has brought a new very painful problem.
So now the doctor is talking about doing a hysterectomy. He said Im not a canidate for a surgery like this because of my blood thinners. I will have to go off them and take the lovenox shots and I will probably get a clot. Theirs a chance I can make this surgery and a chance I may not.
Its always something anymore right?
Not the news you want to hear especially when you have 3 young kids and even close to the holidays.
So now I sit back here and sit on the waiting boat to have surgery once again. Its not fun.
But God will take good care of us all and get us through this. He shows us the strenght we have and doesnt put us through what we cant handle.

Im so happy mom is doing better each and every day. She just needs to keep focusing on recovering and getting better. And mom just a thought can we really quit playing the taking turns for surgery game. Its really not a fun game to play to get pay backs. :)

I hope all of you are recovering well and those that are waiting hang in there. You will get through it. Your tough.

Waiting again
Stephanie

On March 3, 2009 was the day I had a mechanical valve put in my aorta valve. Was only 29 years old then and now 32. Doing great. Every checkup the doctor says everything sounds beautiful and I tell the doctors lets keep it that way. When I was born the doctor told my parents I had a heart murmor. After having my first child at 23 they diagnosed it with aortic stenosis. After baby 2 they said its gotten a little worse start thinking of surgery. After baby 3 it was time. Then my husbands job went bankrupt and he got laid off. So we got a new job got moved and that Nebraska Heart Institute fixed my heart.
It makes you think twice about life and fill blessed to be here.

Now my mom Linda Hillman is having her heart surgery done Sept. 19th. She is gonna do great and make it through. I will be sitting in that cold operating room (in spirit) holding her hand while out in the waiting room holding my dads and keeping him calm also. Its my turn to be on the other side waiting now. I will keep you all posted the best I can.

Hope everyone is having speedy recoveries. Those of you that are still waiting, your gonna be fine and do great.

God bless you!