Newcomer with lots of questions

[78vette]

I finally got the call from Cleveland Clinic telling me that my surgery to replace my pulmonary valve will be on Dec. 14th. I have been reading many of the posts on this board and am so glad that I have found such a support system. I had my first OHS in 1975 at Children's Hopital in Oklahoma City (Dr. Ron Elkins Sr.) and now am going to CCF where Dr. Gosta Pettersson will be performing my surgery. First, I would like to hear from others who have been to Dr. Pettersson and about their experiences. Secondly, I would like to know from others who have been to CCF where is the best place to stay. I will need to stay in a hotel for a few days while doing outpatient testing before actually being admitted for surgery. Thirdly, what are some of the things that you took with you that made your hospital stay and experience much more tolerable and that you would recommend others taking or doing as well? Thanks for all you help in advance.

 

[geebee]

I would like to welcome you to this site. You will find lots of assistance here. I cannot address the questions about the doctor or hospital nor the pulmonary valve replacement as I am a mitral valve patient. However, I am sure you will hear from others who can.
As far as making your hospital stay easier - take a good book. You will find there are times you want to have something to do - the rest of the time you will only want to rest. I took a picture of my family with me as I found it comforting. Most hospitals will allow you to wear your own "lounging clothes" & PJs once you are out of ICU so you might want to bring (or have someone bring to you) your own duds. I found this comforting as well and much more glamorous than hospital gowns. I also brought my own soap and toiletries. Also, I was very firm about not removing my wedding band and they taped it and let me leave it on.
Keep us posted and best of luck.
Smiles,
Gina

 

[Kay]

Welcome!

Welcome!

Welcome to our vr.com family!

This forum has changed my life, as I've expressed in previous posts. I can't tell you what an incredible difference it's made as I've prepared for my surgery. I've had my questions answered by amazingly knowledgeble members, had my fears calmed, and gathered important information such as which valve to choose, etc.

But the really big thing I've gained here is friendship. Lifetime bonds! I am in awe of how such caring and compassionate people are being brought together on this site. I'm constantly amazed at the love that is shown for each other on this board, and how everyone jumps to the aid of a new, scared member. And all of us were new and scared when we joined! You'll be blessed by the outpouring of kindness you'll see over the next few days.

Another thing that fascinated me about this forum is the amazing coincidences that happen all the time. Look at your post. Look at the time. Then look at the post a short time earlier from sethgold. Read it! You're having a pulmonic valve replacement on Dec. 14th. He's having a pulmonic valve replacement on Dec. 14th! It's your second OHS. It's his second OHS. Both of you are new and frightened. Both of you have a million questions and both of you stumbled on this board tonight. Is that amazing or what! There are even more similarities. Look at the dates of your first surgeries...

I could go on and on. It's an amazing place and you will count this day that you found it as one of the best in your life. You'll be a different person after spending a few days here!

You've now got a whole new family pulling for you. We're so glad you found your way to us!

Love and prayers,

Kay

 

[twoboysdad]

What can I say after Kays comments. She hit the nail on the head!


My first OHS was at CCF. I was only 16 so I didnt worry about the hotel situation. It seems there is a hotel real close to the hospital that we stayed at. CCF should be able to give you information on that.

I am 6 weeks post op from my second OHS. The best things to take with you are; a walkman or discman, a phone card for long distance calls, a hat (since you will be a few days before a decent shampoo) If you like to read, take a good book or two. Other than that there is not much more I can think of.

As far as everyone that will be in the waiting room; there is not much to say. No matter what they bring to pass time, thier thoughts and prayers will be with you and until the Doc comes out and says everything is fine and you are in ICU and doing great. They will not think of much else.

There was two things that got me through this surgery and recover. First and Formost. VR.COM secondly a new device called The Heart Hugger. This is a harness that you wear after surgery to hold yourself together when caughing, sneezing and getting up and down. Beats the old pillow method! My second surgery was at the Toledo Hospital in Toledo Ohio. The Heart Hugger is something each heart surgery patient gets. I never heard of it until then. Here is a link to the heart hugger website http://www.hearthugger.com/flash.html. If CCF doesnt use these, I highly recomend going to the website and buying one.

Good luck. Our prayers will be with you. Welcome to VR.COM ask any questions you like. Someone here will have some good advice!

 

[Gnusgal]

Personally, I had a problem focusing right after surgery, so books were hard to concentrate on (and believe me, I LOVE to read!). Instead I'd do word searches and other "brainless" activities. My mom also happened to have a portable DVD player that she brought up to the hospital and we were able to watch movies to pass the time (I know that's not necissarily a possibility for everyone). You might try thinking about something you can do that doesn't take a lot of thinking. The walkman is a good idea to help tune out some of the noise from the rest of the hospital (or your roommate if you have to have one).

I don't think anyone has mentioned bringing slippers or some sort of footwear that you can put on for walking the halls. It's a good idea to have something that you can just step into, rather than needing to reach down and pull onto your feet, since you'll be sore at first.

I can't think of anything else right now, but I'll keep thinking. I'm sure others will come up with much more. I wish I could give you some answers for your other two questions, but I don't have any experience with either the hospital or the doctor. Good luck!

 

[bvdr]

Welcome!

The thing I found most useful post-op was a portable CD. I wasn't able to concentrate enough for most TV programs and found it very difficult to read and comprehend what I was reading. Visitors brought me some magazines but even they seemed more like work than rest. I did bring my own toiletries. Your ability to smell and taste is likely to be off for a few days so even your favorite soap may seem unfamiliar. My mouth had a funny taste and having little breath mints handy was very nice.

It takes a while for all the anesthesia and medications to be eliminated from your system and during this period you will likely have "sweats" to the point your bedding and clothing may be very damp. This started for me in the hospital and continued on and off for several weeks. I found knit sleepwear to be more absorbent and thus more comfortable.

I've never been up to Cleveland but I'm sure they have a recommended list of places to stay as people come from all over the world to go there.

 

[Ross]

As far as where to stay, they have the http://cleveland-conferencecenter.intercontinental.com/ connected to the clinic, but I'm sure it's an expensive stay. They using this first link I provided guarantees you the best rates on reservations, so you may want to check that out.

You may want see this link and make some calls:
http://cms.clevelandclinic.org/body.cfm?id=142

Here is a map of the campus:
http://www.clevelandclinic.org/maptour/campus.htm

When it comes time for testing and such, you'll be kept busy all day long on campus, so if the Intercontinental hotel is affordable for you, it's the wisest decision. The Clinic is not in a very nice neighborhood, so the less you have to travel or foot it, the better.

 

[78vette]

Thanks for all your help. We are taking a portable DVD player and laptop as well (my husband has to work from the laptop while we are gone since we own our own business). The mints are a great idea and I am going to buy some today. Will keep you posted on progress. Thanks again.

God bless you,
Tawana

 

[John & Joann]

I think that we can help you on many counts. Joann had her MAJOR surgery at Cleveland Clinic in 1999. Dr. Gosta Pettersson was the surgeon. He is FANTASTIC! Others on the board have had him and everyone says good things. He came to Cleveland from Denmark where he did more cardiovascular surgery than anyone in a 5 country area. He is friendly but very business focused. Expect good things from Dr. Gosta and his entire team. You will not be disappointed.

For housing you have 2 choices: The Guest House is opposite the main building. It is a Days Inn type of operation that is 100% operated by area residents that have been trained in hospitality management. I can say nothing but positive reviews of the facility. The are TRUE professional in working with families and patients. Every visitor has a problem or they would not be there. There is also an excellent restaurant that is connected to the motel. It is a set down Deli style with daily specials. The food is good and the staff is very responsive.

The Intercontinental is a 5 Star facility with a price that matches. It is a quality facility with excellent restaurants. We did not use the facility because of cost.

The Guest House costs about $750 per week. Each room has 2 double beds which was of benefit to our family when brothers/sisters/daughter were there for the evening, etc. It is also convenient for family members to return for a few hours of break from the hospital. They have intercom communications from the hospital to your Guest House room. Guest House has free parking while the Intercontinental does not have the free parking.

There are several stores in the area, but it is NOT a place for you to go for a walk. There is a free shuttle bus service to all Cleveland Clinic Facilities.

Please PM us to answer any questions. We are also available for telephone questions following the PM. I can also give you driving directions, etc.

God Bless!