Natalie's Heart Valve Journal

This wilI probably be my last post for awhile. I had my follow-up appoitments in Cleveland on Monday with the Rhuematologist and the surgeon. I am happy to report that my Echo and MRI both looked great! Both doctors where happy.

I am now on 10 mg of steriods and will go down 1 mg a week for the next 10 weeks. I will remain on my infusions and cellcept to make sure that the Takaysus stays in control.

I am still working on completing cardiac rehab. I have 36 sessions total and I haven't been able to go all three times a week for awhile because we have been busy so it is taking a little longer than usual. I think I have completed over half I am working out at home when I can't go. The cardiologist offically lifted all restrictions a few weeks ago (with the excpetion of heavy weight lifting..which I don't want to do anyway) and I have started jogging again. I'm almost back to normal with the exception of some pain in my sternum, which I'm told could take up to six months to go away completely.

It's offically been 13 weeks since surgery. When I had my surgery Dr. Rosselli said it would probably take 12 weeks to get totally back to normal and I remember thinking it is going to be a long 12 weeks. I am happy to report the time has gone by quickly; however, I wouldn't say that I am 100% back to normal. I still have some pain in my sternum on the days that I do a lot... like work out, carry groceries, carry kids around etc.

I am doing well at cardiac rehab and improving every week. I tried to run a little last week but my heart rate got a little higher than they would like so I had to stop. It's a little bit hard to be told at 29 you can't run because you aren't physically up to it but I know that I will be back in action soon.

I have reduced the steriods to 17.5 mg..which makes life so much easier and am happy to report that my blood work has all returned to normal. This is a sign that the Remicade and Cellcept are doing their job and the Takyasus is hopefully under control.

I go back to Cleveland at the end of January for an Echo, MRI, lab work, and appointments with my surgeon and rhuematologist.

I will be at eight weeks on Monday. I started cardiac rehab on Wednesday. My first day was kind of hard.. anything that used my arms made me really sore in my sternum but today's session was much better. I even did weights today. It kind of made me laugh because I am using three pound weights.... eight weeks ago I was carrying around almost 60 pounds of kids and now I'm using three pound weights. I guess you gotta start somewhere. They told me I would have a big bump up on excersizes monday because they start off slow to see how it goes and I have done well with it.

The migranes are back. I have had four this week... not fun. Luckily my mom has taught me the wonderful trick of taking Excedrin with a coke which keeps it at a tolerable level. I'm not really sure why these are happening but hopefully they will go away soon.

On Monday I get to drop down to 30mg of steriods...who hooo! I will also have my second Remicade infusion this week. At the beginning of the week I was starting to feel like my progress was almost a standstill but starting to work out again has made me feel soo much better. I have also had a couple of days alone with the kids this week and they have gone well. I even took them both to costco today...and put them in the cart. Things are slowly but surely returning to normal.

Today is offically six weeks and there are lots of changes happening this week. For starters I can drive now... and ride in the front seat. After six weeks of not driving it will be nice to be able to run errands by myself. The original plan was that at six weeks I wouldn't need help with the kids anymore because I would be cleared for "normal" activities; however, I'm not quite there yet. I have to guess that most people having a surgery like this their normal activities don't include chasing and carrying around two almost thirty pound three year olds. Luckily for me my mom has agreed to come and help for a little while longer. Although I am doing today by myself becaue they will be at school most of the day.

This week I also have appointments with my rhuemetologist and Cardiologist. I should be be starting my remicade infusions but i'm having trouble getting an appointment. I should also be starting cardiac rehab but I'm having trouble getting orders for that. Cleveland doesn't want to do it becasue they haven't actually seen me and the cardiologist here doesn't want to write the orders because they didn't do the surgery. Hopefully I will be able to get that cleared up soon.

In other big news as of last Tuesday my hemoglobin is nine.. this is still low but much better. Also, today I get to drop down to 40 mg of steriods today! Yeah

I have been having more pain in my sterum area recently but I'm pretty sure it is just becauses I have been doing more. I did some laundry and picked up the kiddos a little this weekend. It probably also doesn't help that I can't take advil anymore. Tylenol just doesn't really help with the muscle pain the way the advil does.

Thats all for now.

On Monday I will officially be five weeks out. Sometimes it seems hard to believe that it has already been five weeks.

Things are going really well. I am starting to feel much better and getting out and about a lot more. I started Prednisone last Monday and I can tell that it is kicking in. I feel a little like I am on speed....I suddenly have the urge to clean and cannot sit still and I want to eat all the time. I can tell that my hemoglobin is going up. The color in my face is returning and I am not as out of breath anymore. I will officially have it tested again this week...I'm hoping it will be up to 9!

I will start cell cept this week and then begin Remicade infusions the following week. Hopefully all of this will kick the Takyasus back down and I can get off the steriods before too long.

It has officially been three weeks today. I am happy to report that I turned a corner this weekend. I am feeling much much better. My mom took the kids home for the weekend and I was able to get a little more rest. I slept in and even ventured out to lunch and to run a few errands with Jason on Sunday. I haven't had any headaches for several days, my back is almost back to normal and the incision pain really isn't too bad. My incision looks awesome... I went to get lab work done this morning and the lab tech couldn't believe my surgery was only three weeks ago.

Jason had a sabatical from work (a month off) and he offically goes back tomorrow. He has been such a huge help.. I don't know what I would have done without him during all of this. We will be sad not to have him at home all day anymore...but it will be good to have things start to return to normal. I am still not up for taking care of the kids so my mom and Jason's mom will be helping out for a few more weeks.

I probably won't post for awhile unless something new happens but wanted to let everyone know that things are going well.

It's been 18 days since surgery. Before surgery I thought I would be feeling different at this point. My mom and husband are quick to point out what a big surgery I had and that the doctor told them I shouldn't expect to following the guidelines set forth for heart valve replacement because this was a bigger deal. I'm just impatient to get back to normal.

Yesterday was a good day. I felt pretty good all day and never got a migrane. which hasn't happen for awhile. Unfortunately I probably did too much during the day and ended up having terrible back pain all night. The whole two steps forward one step back thing is true. This process is going to teach me to be patient.

I made it home.. the trip home actually went pretty well. They delayed our flight by an hour so we had extra time to sit in the airport. The flight wasn't very full so I got to spread out in two seats. Jason, the kids and his parents met us at the airport. It was great to see everyone and finally be home. Instead of going to our house we headed to my parents so Jason would have help with the kids and I.

I have had a couple of rough days since we got home. Before this I have only had one migrane headache but since the surgery I have had three. I have also been having a lot of back pain. We spoke with the nurse this morning and apparently this is all normal..ecspecially after a day of travel. Today I have made an effort to get up and walk. I have gone .8 miles. total. My goal is to walk on the treadmill one more time today. I am hopeful everyday will get better.

Jason and the kids headed back to Kansas City today. The kids had school and a doctors appointment and it will give me the opportunity to rest a little more.

Yesterday was a good day. I was able to get out and walk a couple of times.. I'm getting stronger everyday. Mom and I also went to dinner downstairs at the hotel and I actually made it through the whole dinner before getting tired. We also got to skype with Jason and the kids, which always makes my day better. Leah told me she sent me an email that says She loves me. Jack was very wound up and was basically only making monkey faces.

Today we had our final appointments to get the all clear to go home. I still have a small amount of fluid in my left lung and my hemoglobin is low but these will get better with time. They did another chest x-ray to make sure the pockets of Pnuemothorax (which is basically an air pocket) were gone from my right side. The good news is they are gone and I can fly home.

Tomorrow we head home. I am nervous about the trip home. It will be a challenging day.. but I am very excited to see my family. Today is Jack and Leah's Third Birthday!!! I can't believe that my babies are three.. I guess I need to stop calling them babies now. They are celebrating with Jason and his family today..and I will celebrate with them tomorrow.

It’s Natalie again. I had good intentions of doing the post myself yesterday but as Mom said I was having some issues with medicine (Tylenol of all things) and the short trip to the hotel was much more tiring than I expected.

It feels great to be in the hotel. I am loving the real food, hot showers, and living in more than one room. I am feeling a lot better today. My biggest complaint is actually shoulder and neck pain. The surgeon said it is probably from the way they have your body in the operating room. I was feeling so much better this morning I forgot I still need to take EVERYTHING slowly. I hopped off the couch and walked out the door at normal speed to go to lunch only to discover if I don’t get up slowly I can’t see anything. After laying back down and trying again Mom and I made it down to the lobby for lunch. It was nice to get out of the room work on getting my stamina back. I am going to try and do another walk this afternoon…I gotta get ready for our travel day on Friday.

Heading in to the surgery we were under the impression that my Takayasus Arteritis was under control. My blood work looked good, I felt good and I hadn’t taken any medication specifically for the takyasus in over a year. One of the good things about this surgery was that the doctors would biopsy the tissue they removed to see if there was any active inflammation. With Takayasus blood work is not always a good indicator and the only way to truly know what is going on is a biopsy.

We got the biopsy back a few days ago and found out the disease is still active. This is obviously not the best news.. and means I will be starting medication for the Takayasus again soon. Unfortunately medication used to treat Takyasus does so by weakening your immune system which is obviously not ideal when you are trying to heal. We haven’t gotten the official plan from my rhuemetologist yet but I am told it will most likely be starting steroids soon and then Remicade (a monthly infusion) in 8 weeks or so.

If you have ever taken steroids before you know they are not fun. They are not the kind that make you stronger and faster..these are the kind that make you puffy, weak, tired and anxious. They work well but have two pages worth of side effects that come along with them. I have taken them before and am not excited to go down this path again; however, this time around it should be easier. Last time I was entering college.This time I have the support system I had before AND my wonderful wonderful husband and beautiful children. I know I can do anything with the support of my family.

I feel grateful that we know the disease is active and will be able to stop it before it does any more damage to my other arteries. I also feel grateful to have the best doctors in the country for Takaysus caring for me.
That’s all for now!

Natalie

Sept 18, 2012

It feels really good to be out of the hospital. Natalie had a little trouble getting to sleep last night. The beds here are a little harder for her to get comfortable in. She has a recliner here and may try that today. In spite of that I think she still got in a longer sleep than at the hospital. We had breakfast in our room and may try going to the restaurant in the hotel for lunch ( we'll just see how things are going) She was up to skypeing with Jack and Leah this morning. They all three had really BIG smiles!! Thanks for thinking of us, we love seeing all the messages.

Love to all, Rhonda

Monday September 17, 2012

It took all day but Natalie is out of the hospital. Last night was a little rough. She didn't sleep very well because the medicines were bothering her stomach. They decided it was the tylenol. She has cut back on all meds which is good and bad. We made the trip from Hospital to Hotel without too much trouble. The stairs on the shuttle bus were hard for Natalie which surprised her a little. She's been walking but not doing any steps. The highlights for today were: the yummy dinner from room service and the real beds (for both of us I've been sleeping on the little thing they call a bed in Natalie's room) We are going to sleep Good Night
Rhonda & Natalie

It's Natalie. After having my chest tube removed yesterday and getting a shower I feel like a whole new person. Mom is back at the hotel showering and such and I have opened the shades by myself, went on a walk to get water and managed to carry the lap top to the bed. These may not sound like big things to you but they are huge accomplishments. I will probably be very tired and sore later because all of this but beginning to feel a sense of indenpendce is good.

I will hopefully be released from the hostpital tomorrow; which is a couple days sooner than they originally expected. I like feeling like an overachiever. I have switched to taking advil and tylenol for most of the pain and am only using the pain pills occasionally, which is a good step.

Natalie finally got her chest tube out this afternoon and is much more comfortable now. She was very nervous about having the tube removed but it did not appear to be bad at all. We went to the roof top area, walked around the halls several times and she gets to take a shower in a little while. Still gets tired very quickly but everyday we see improvement. Now that Natalie is feeling better she is getting a little bored. I hope we can move to the hotel soon. A change of scene would be nice.
Rhonda

Natalie and I slept very well last night. She was able to sleep for 3 hours at a time (nurse came in every 3 hours). Pain control is still going well, we are waiting for an xray this morning and then with any luck will get the chest tube out. Will check in around lunch time.

Rhonda

Friday, September 14, 2012

Natalie is having a good day, she is feeling better and walking more. Still has her chest tube at least until tomorrow and then will recheck and let us know. Everything is planned for 24hrs at a time, we don't get many long term plans at this point.

Jason is heading home to be with the kids, I know this is making Natalie sad but it is for the best. I hope I can fill his shoes, he had been amazing.

Natalie is hopeful she will get the chest tube out tomorrow because she really wants to take a shower.
You can tell she is gettig better.


Rhonda

Quick update on Natalie's progress.

She continues to move around better and better each day. Taking more walks and doesn't need as much assistance as the day before. She still gets a little dizzy and tired rather quickly.

Chest tube is still in and draining. We are anxious to have it removed but will need to see how tomorrow goes.

Until then,
Jason

Good evening everyone,

Happy to report that Natalie was able to go on two walks tonight and both times made it a pretty good distance. Each time she experienced some dizziness and fatigue but was pleased with her results. Her nurse told her it was only normal and should go away slowly. Mostly just part of getting back in shape.

The pain she was experiencing last night and this morning now seems to be at a manageable level. Most of the afternoon she has been able to get a lot of rest and has also been eating very well.

Currently she only has one chest tube left and the doctor thinks she could get rid of it by tomorrow or Friday.


Jason

Pain has been reduced with new meds so doing much better this afternoon. We're getting ready for a walk and our goal is to make it to the door of the room, possibly further.
Overall a good day with up's and down's but gradually moving forward with progress.

More to report later.

Jason

Last night I was able to share the room with Natalie. My bed was a pull out bench that was kind of like a futon and required an extra sheet rolled up to fill the crack down the middle. Not bad but not great. I was just happy I was able to be with her.

Around 9pm we think a lot of her anesthesia wore off and really started to cause some pain around the incisions. That is completely normal just not very fun.
Because of that her nurses came in several times through the night so we didn't get much sleep.

Having some pain isn't necessarily a bad thing (easy for me to say), I actually think it is a good sign and means that she is recovering.

This morning they are trying some new meds to help her through it and will hopefully get her some much needed sleep.

Next up.....walking across the room.

Thank you everyone for the comments in her guestbook, I've been reading some aloud and can't begin to tell you how much it means to her.

Jason

Natalie Day 2

Just added a pic of Natalie in her hospital bed. (click on My Photos)

She is doing great!

Natalie is now out of the ICU!!!! Everything is looking good, two of the three chest tubes and her central line have been removed.

We are now focusing on breathing treatments and possibly some walking as early as tomorrow.

She continues to do more than they ask and moving faster than anyone expected.

Jason

Happy to report that Natalie is doing better than expected and it looks like she'll be able to go to the step-down unit some time today.

She had her first move out of bed (with the nurses help of course) into a chair where she stayed for about two hours.

Next up: Should be removing chest tubes sometime in the next couple of hours.

Still very sleepy but very much aware of her surroundings.

More to report later.

Jason

Just returned back to the hotel from the ICU and checking on Natalie. She is progressing along quite nicely. Her nurses just removed the breathing tube and she is starting to talk some but is very tired and still in a great deal of discomfort.

Tomorrow or Wed, we expect to move to the
step-down unit where she'll be for 5-7 days.

Good day. Extremely proud of Natalie for her strength and courage.

Talk to you all manana!
Jason

Sorry for the delay, surgery took a little longer than expected but Natalie is on her way to the ICU and is stable!

Dr Roselli said the replacement of her aortic arch went really well. All said, he performed 11 anastomosis (surgical connection between two structures).

The great news we were also looking for...The valve was able to be repaired!!!! Natalie will be so happy to hear this as she was very worried about possibly doing another surgery in the future.

I can't tell you how happy we all are to hear how pleased Dr Roselli felt about the entire surgery, he called it a 9.5 out of 10. Because he never gives himself a 10.

Next update should be in about 3 hours.

Thank you everyone for the prayers and positive thoughts!

Jason

Just wanted to let everyone know that Natalie's surgery officially started at 8:30 EST today. At 10:15 we received notice that they were begining the major portion and our next update should be when they are finished around 1:30.

Thank you to everyone for all the thoughtful messages and prayers for Natalie. I can't tell you enough how much it means.

Jason

This is Jason, I've taken over blogging duties, so I apologize in advance for my run on sentances.

Today Natalie has been checked into the hospital and everything is going very well. The staff here is nothing short of amazing. Everyone here is so nice and calming. I can tell Natalie already feels a little less stressed.

We just found out that Natalie will be the first up for surgery tomorrow morning at 6:30-7am EST
This was good news to say the least. Waiting around all day didn't seem very appealing and Natalie is not the most patient of patients.
We expect surgery to last around 4 to 6 hours and then immediately off to the ICU.

I'll keep the blog updated as much as possible tomorrow to let everyone know her status & progress.

For now, I need to run, Natalie is trying to change the channel to "The Sound of Music".


Jason

My second day of preop was much easier than the first. We went to the hospital at 9 am for my TCI (To come In) Appointment. We were taken back around 10:30 watched a movie, met with a nurse practicioner, a fellow from anesthesia and then were free to go on our way.

We had lunch at a cute little place in Little Italy and then came back to the hotel for a nap. I was still a little tired and sore from my cardiac cath. We ended up eating dinner at the intercontinental. I miss the kids like crazy but it has been nice for Jason and I to have some time together before surgery.

Today is our free day. We went down to the central market this morning which was pretty cool and then found a chipotle near the hospital. This afternoon we are watching some college football and playing Gin Rummy...jason was sad we couldn't find the K-State game on TV here.

Lots of people on their blogs have said they have had a feeling calm before surgery. I'm waiting for that to happen. Tomorrow my parents will get here and I will be admitted to the hospital at 11:00. We won't know what time my surgery will be on Monday until tomorrow. I'm hoping to be the first surgery of the day.

I am still debating what kind of valve I want in case in needs to be replaced. Leaning toward the biological valve; however, the thought of doing this all again is making me consider a mechanical valve.

Again Thank you everyone for your comments, texts, calls etc. I can't tell you how much it means to know everyone is thinking about us.

I want to start off by saying that you to everyone who has left us messages on this site or on my facebook. I can't tell you all enough how great it is to know so many people are thinking about us during this time.

Jason and I survived our first preop day. I say we because jason has been by my side all day and has been a wonderful nurse.

Appointments started at 7 am this morning. I saw a cardiologist, had and EKG done, Lab work,chest x-ray ultrasound of my femoral arteries and finally a cardiac catheterization.

At 7 pm 12 hours from the start of our day we finally headed back to the hotel. I am sore from the cardiac cath and tired from getting up so early and looking forward to a room service burger, skyping with the kiddos and watching a movie. Tomorrow will be another long preop day.

Exactly one week from today is my surgery. My husband and I leave for Cleveland on Wednesday morning. We have spent the day today trying to get our house in order, catching up on laundry, packing and spending some time with both sides of the family.

I am getting pretty nervous now.. I do okay durning the day because we have been so busy but it has been hard to sleep. A big part of me is just ready to get this over with and be able to stop thinking about it. I am also worried about being away from the kids for 16 days. I know they will be fine because they are with family and friends that love them and then Jason will go home and take care of them but 16 days is a long time to be away from your babies.

50 Days away... not that I'm counting. My husband and I went a couple weeks ago and picked out a recliner. We decided to get theater seating instead of a plain recliner so we can put them in the basement "man room" after recovery. We got the electric kind that people had suggested. The chairs were delivered last week and while they are not what I would normally pick out for my living room they are soo comfy and I can definetly see myself sleeping here after surgery.

I also ordered Adam's book and read it in one day. I would highly recommend this book to anyone that will be going through surgery. I wish I had ordered it a few weeks ago. It made me feel much calmer about the whole thing. I have had major surgery before (renal artery bypass), but there are not a lot of resources online about that kind of surgry. Having books to read and a website with so much information has been really helpful this time around.


I think things are pretty much in order now. I even got my packet from Cleveland Clinic. My first day there I have appointments a 7:15 appointment with a Clinicican, 8:00 appointment with a cardiologist, 8:50 appointment at the Lab and 9:10 chest X-ray... I guess this means my Cardiac Cath will not be until late morning or early afternoon. I know this is going to be a long day. The next is what they call my "To Come In Appointment." The packet says to bring a snack and plan on being there all day. It looks like my husband and I need to stock up on books for the waiting rooms.

Jack and Leah at the Beach

I have two months until my surgery but I am thinking about it constantly.. no matter what I am doing it is in the back of my mind I can't seem to concentrate on anything. I feel kind of bad for my family at this point because I'm just kind of a mess, one minute I am fine and the next I'm crying and then worrying. I'm hoping that it will start to get better.

I do feel better becasue I have started to get arrangements made for the kids. We went ahead and bought a recliner and we booked our airfare and reserved hotel rooms yesterday. We are going to stay at the Intercontinental Suites. Crazy to think that I will be gone from home for slightly over two weeks. I know I'm going to miss my kiddos like crazy. I am hopeful that we can skype often.

I also bought the heart 411 book this week and I have read quite a bit of it already. It is helping to feel more informed. I am thinking about ordering the Patients Guide to Heart Valve Surgery as well, but can't decide if it will cover enough new information.

The cleveland Clinic called yesterday and I offically have a surgery date. The surgery will be September 10th... but my husband Jason and I will have to be up in Cleveland on September 6th.

I will have a Cardiac Cath on September 6th, preop appointments on September 7th, a day off on September 8th and then I will be admitted to the hospital the night before the surgery on September 9th. I should be getting detailed information in the mail soon. The only thing I have to do between now and then is to get a dental clearence..which shouldn't be a problem.

For those of you that had a full sternotomy how soon did you fly home after being released from the hospital? The doctor said I could fly home as soon as I am released but most people opt to stay in a hotel for a day or two to rest before navigating an airport.The doctor told me that I would be in ICU for two days and the hospital for six. I am hoping to be home for my twins third birthday on September 20th if at all possible.

Having a date makes it all seem more real and I am getting really nervous again. I am trying to focus my attention on coming up with plans for who will watch the kids while my husband, mom and dad and I are all in Cleveland. Luckly we have so many wonderful friends and family that have volunteered to help us out.

I have a couple of other random questions for those of you who have been through this before. Are there things that I need to have at home to make recovery easier? I notice a lot of people talking about sleeping in recliners... should we try and find one? Anything else we need? Anything you recommend I take to the hospital with me?

I just returned from my visit at Cleveland Clinic. My husband and I got to meet my surgeon and visit with my rhuematologist. The surgery will most likely be scheduled in September but I will know for sure next week.

I have known for sometime that I would need to have this surgery, but I thought I would have a few more years before it actually happend. It came as quite a shock when what I thought was going to be a quick visit with a surgeon turned into flying up to Cleveland and acutally schedulling an appointment. I am going to have a graft placed in my asending aorta and possibly the aortic valve replaced. The doctor will try to repair the valve if at all possible but he said there was no way of knowing for sure if that can be done until he gets in there so i need to have a decision ahead of time about what kind of valve I would like. I have heard the pros and cons of the biological valves vs the mechanical valves but am not sure which way I will go. Because I am so young a biological valve will mean having another major heart surgery in my future by a mechanical valve would mean blood thinners for the rest of my life. Its something I'm going to have to give a lot of thought.

I know that Cleveland is the best place to be for surgery but I am still nervous. I have spent the last two weeks reading other peoples journals and it is somewhat comforting to heart how well the majority of people are doing and it is helpful knowing what to expect.