I'm getting very nervous.....

[designlady]

Hello All!

First I want to thank all of you that have gone before us "newbies". The posts I've read have been so reassuring to me! This is a wonderful site and has offered much encouragement to "chickens" like me!

I am scheduled to have arotic valve replacement on Jan. 9, 2008. This is the second time this surgery has been scheduled. In the Spring of '07 I was scheduled to have the surgery and ended up with endocarditis two days before surgery. It was a long and painful Spring and Summer, most of which was spent in and out of the hospital. Now I'm considered "cleared" again and am facing the "knife"...

I am having the surgery at the University of Tennessee Medical Center, Knoxville, Tennessee. My surgeon is Dr. Raymond Dieter. I settled on having my surgery here specifically because of Dr. Dieter. I feel so comfortable with him...he would come and see me everytime I was in the hospital this year. I bought him an "Operation" game for Christmas and told him to practice a lot before Jan. 9th.
Unfortunately he is extremely worried about my post-surgery situation. 30 years ago I had Hodgkins (a form of cancer). Because of that I had my spleen removed thus I am open to major infections. I'm more than a little anxious about everything....so anyway I am just looking for a sympathic ear without burdening my family more than they already are. So thanks s for listening. I would appreciate any advice as a way to overcome my case of NERVES....

Merry Christmas!

Jane

 

[Philip B]

Worries

Worries

I don't know much about easy fixes for the worries you have as you face your surgery in January. It does sound like you are a survivor. You beat Hodgkins thirty years ago and that may have been tougher than dealing with OHS. You might just have more inner strength and resolve than some of us.

The worries and stress you are feeling are pretty normal. It sounds like your doctor is focused upon your entire health situation and will undoubtedly have a plan in place to deal with any infection issues that may come up. Given your history, I'd be more worried if your doctor wasn't worried.

Call me fatalistic, but I honestly believe we're here for a reason and we're not allowed to checkout until we're done doing what we're supposed to get done. Keep focused on a positive outcome. You'll be okay.

-Philip

 

[Superbob]

Jane,

I had trouble reading all of your message. For some reason, the sentences went off the right margin and I couldn't follow all that you were saying. (Maybe the glitch is on my computer.)

Anyway, I just wanted to say that being nervous and anxious is something that we all go through, and it is certainly understandable that you are at that point right now. Very glad you have joined us and posted. There are many great folks here who can help answer questions. I gather you have been through some health issues before, and no doubt others will have similar experiences to relate.

I hope you find any help you need in preparation, and that you have a blessed Christmas. Look forward to hearing more from you.

Cheers,

(And go, Tennessee Vols! I am a former Tennessean who still roots for the guys in orange -- and gals, too. Not just football but those Lady Vols who are No. 1 in basketball.)

 

[temp69]

u will be fine

u will be fine

just let those words wash over you, being nervous is soooo normal, i was terribly nervous, and yet, looking back i don't know what else i could have done. so...just breathe, and know that every day will be an adventure of sorts, and that you will make it through just fine and your recovery will be slow but you will get better every day.

good luck and we'll see you when you're done with your surgery. you will be fine.

 

[Susan BAV]

Hello Jane and welcome to the site; glad you found it. I read in your profile that your mother sent the site address to you after it was given to her--very nice. I've recommended this site to others also.

Your feelings are absolutely reasonable. You may find it encouraging that there are some other members here who also have been successfully dealing with the non-Hodgkins treatment side effects and hopefully some will post something encouraging for you when they see your post. Also, did you read the stories section? I believe a few have written their personal experience stories down about it also.

You will have more questions. Feel free to post them. Take care. Hoping all goes very well for you.

 

[Curtsmum]

Just wanted to wish you best of luck with your surgery and hope you have a very speedy recovery

 

[Phyllis]

Nervous is normal as I am sure you have read in many posts here. There are quite a few who have had AVR after having Hodgkins and I'm sure a lot of them have also had their spleen removed at that time. They will be along to reassure you in time. I put you on the calendar for January 9th and we look forward to helping you through to a successful surgery and uneventful recovery.

 

[WayneGM]

Welcome to the VR community, Jane. Sorry for the circumstances but glad you found us. Being nervious is normal...doctors and medical procedures of any kind always make me nervious but the thought of heart surgery.....

However, now that it is behind me I can honestly say OHS was not nearly as bad as I feared. The surgery itself was over in the blink of an eye. In fact, I could not believe how quickly I bounced back just a few days after it. As I look back, the worst part for me was the waiting for it and then pacing the physical recovery. Now I'm almost 2 years out and the OHS is a distant memory. Best wishes and good luck.

 

[Cooker]

Hi Jane,
Welcome to the zoo Nerves are normal, we all had a case of them before surgery. Glad you found us. This place and people were a godsend for me. Keep us posted.
Tom

 

[thenewmarket]

Welcome......you will learn so much from this forum. I sent you a private message with my phone number if you want to call. We live within miles of each other,and my husband is being followed at UT after his surgery in September of this year at Cleveland Clinic. Again, welcome and please know that everyone understands your anxiety.

 

[netmiff]

Welcome

Welcome

"Welcome to the VR community, Jane. Sorry for the circumstances but glad you found us. Being nervious is normal...doctors and medical procedures of any kind always make me nervious but the thought of heart surgery.....

However, now that it is behind me I can honestly say OHS was not nearly as bad as I feared. The surgery itself was over in the blink of an eye. In fact, I could not believe how quickly I bounced back just a few days after it. As I look back, the worst part for me was the waiting for it and then pacing the physical recovery. Now I'm almost 2 years out and the OHS is a distant memory. Best wishes and good luck."​

I have to echo everything Wayne says, except for me it's been just over 3 months - I can clearly remember that OHS = ! However, I bounced back quickly - OHS Sept 6th, discharge 12th; worked at home 13th, opened my first retail store October 1st .... in fact, an acquaintance asked me just yesterday how I was feeling, and I had to think about what was "wrong" with me !

If your medical team is aware of the possible complications, they wll be able to anticipate them, and I am sure they will have everything under control. It is so easy to say "forget being nervous", but much harder to do. Just do what you have to - I did "busy" work for about a week before I went in, cleaning out linen closets and such, and my DH was wonderful and knew exactly what was going on, probably even before I did, and just let me do . . . and do . . .

Anyway, add my best wishes for a good result and an uneventful recovery.

 

[sknydave]

Everyone gets at least a little bit nervous. The way I looked at it was "Sure, there is a slim chance I wont make it out of this surgery, but there is a HUGE chance I won't make if I don't have it done."

Just look beyond the surgery to the things you will be doing once you recover

 

[Blnmakerr]

Jane:
Glad you found our site, it was a blessing for me prior to my BAVR surgery in September. Being anxious is very normal prior to the surgery. You will however be amazed at the inner strength that you will find just before the surgery. Don't know where it comes from, but it will .....

Try to stay busy and keep your mind focused on the positive outcome of the surgery. The goal is to get to the other side of the mountain, and you will make it! Like others have said, you are a survivor.....

Best wishes for a successful surgery and uncomplicated recovery....

 

[harleygirl528]

Hi Jane! Welcome to this site and as a fellow "newbie" I can tell you I am right there with you! My surgery is scheduled just one week after yours, January 16 and being nervous has been a way of life for me. I can tell you that things have gotten a LOT better since I discovered this site and was able to gain strength and encouragement from others who had gone through it. No matter how much our friends and family want to be understanding ad encourage us there is nothing like the encouragment of someone who has truly been though it.

Some things I have found particularly helpful, besides this site, are deep relaxation and meditation and finding a surgeon I have complete trust and faith in. I had never really meditated before so I actually bought some cd's that are guided meditation...someone in a very relaxing voice guiding you through mediation exercises. It is very helpful.

I know how you feel about feeling like you are burdening your family with your fear and concerns but the folks here know exactly how you feel and you will find that there are always plenty of people willing to listen and help you.
Take care and keep us posted. Try to relax and enjoy your holidays!

 

[ALCapshaw2]

Welcome to our World Jane,

There are at least a Dozen Hodgkins Disease Survivors here on VR.com (I am one of them).

Have you selected a Valve or Valve Type yet?

If not, I would encourage you to discuss this issue with your surgeon. Most Radiation Survivors are advised to get a Mechanical Valve since they are designed to last several lifetimes. Because of the Scar Tissue Damage from Radiation, repeat surgeries are High Risk and NOT recommended. FWIW, I had asked for a Bovine Pericardial Tissue Valve (which my surgeon agreed to implant), only to wake up with a St. Jude Mechanical Aortic Valve. My surgeon did NOT want to ever have to replace it due to scarring issues.

You may want to ask your surgeon if he has operated on Radiation Damaged Hearts before, and if Not, suggest that he confer with surgeons who have experience in this area BEFORE your surgery. Surprises in the OR are generally NOT a good thing.

I have been told that even the Major Heart Hospitals only see a few Radiation Damaged Patients per year. The corollary to that statement is that Surgeons with the most experience with Radiation Damaged Hearts are found at the Major Heart Centers such as Cleveland Clinic (#1 Heart Hospital), Mayo Clinic (#2), Duke, Emory, UAB, etc.

Do a SEARCH on VR.com (see the Blue Bar at the Top of the Page, Search is the 6th selection to the right) for keywords "Hodgkins" or "Radiation" to find MANY posts discussing these issues.

Please Feel Free to ask ANY questions that come to mind. There is almost always someone who can answer your questions or point you in the right direction.

One thing I want to share with you is that I was quite envious of the stories of rapid recovery, especially by the younger, more athletic members.

MY recovery had some 'bumps in the road' and was WAY SLOWER than I would have liked. This is not uncommon among Radiation Survivors. The GOOD NEWS is that I DID continue to improve for a full 18 months when I was finally able to push mow 2 acres and hand saw large tree limbs (up to 6 inches).

Bottom Line: Push a little when you can, and rest when your body tells you it needs to rest. Slowly but surely, you will get better, week by week, in spite of having some 'down' days along the way.

'AL Capshaw'

 

[DeWayne]

Being nervous is what we all experience, Heck my wife would not let me drive to the hospital the morning of my operation for fear I would detour to Florida.....

FOr the most part make sure you have your after operation care ready, all those things to help you at home. This surgery has become pretty commonplace anymore and it sure looks like you have a doc that is looking out for you. All good things. Best of luck and see you on the other side soon enough.

 

[nickm3]

Jane,

Try not to worry so much, I know that is easier said than done but I was in your shoes about 9 years ago. I had Hodgkins back in '78, they also removed my spleen before starting with the chemo and the radiation therapy. Ended up in the hospital 20 years later with pneumococcal meningitis where they also found that I had endocarditis and needed to have my aortic valve replaced right away. So that operation went off well even though I was pretty weak at the time and I was able to recover quickly, I don't think that not having a spleen hampered my revovery at all. Remember that these types of operations are fairly routine these days and while they are a major operations the process is highly refined with very high success rates.

Best of luck to you,

Nick