(almost) 3 months post-op check-up

[bvdr]

Well, today I had my (almost) 3 month post MVR check-up.

In one way it seems like the time has flown but then it also seems like this process has been going on forever. In a few weeks I will be finished with cardiac rehab which, though very beneficial to me, has taken alot of time. Tomorrow I get my fat measured again....UGH!

My echo report could have been better but it could have been worse too. At this point it seems that what is causing the most concern is some lung issues. To make a long story short several weeks ago I had an abnormal chest x-ray and an abnormal follow-up chest cat scan that shows quite a bit of scarring. My right chest feels quite "tight" at times and I do have pretty consistent mild pain that goes through to my back. My cardio feels these are undesireable side effects from the heartport procedure. The other lung issue is that my pulmonary hypertension is the same as before surgery.

At this time, from my personal point of view, I would really hesitate recommending the heartport procedure. I'm sure it is wonderful for many many people but I'm not sure it was the best route for me.

In two weeks I have another stress test. In 6 weeks I have another chest cat scan. In 3 months another check-up with my cardio. I am so glad I have insurance!

My meds have stayed the same but now also am on a beta-blocker.

Other than that I am doing quite well. I am able to do the things I love to do and am physically much improved over pre-op. I'm just not perfect yet........I forgot when that's due. . The other thing I forgot was to ask my cardio about my memory!

 

[Karlynn]

Betty,
I'm sorry that your 3 mo. didn't give you as good a news as you'd like to have. But the other side is that you really are still in the "toddler" stage of recovery. (Even though you are Super Toddler, making a trip to the reunion!) There's a lot of time that needs to tick away in your recovery.

Keep your positive, strong attitude!

All my best,
Karlynn

 

[Nancy]

Hi Betty-

Sounds like some good and some just OK from your latest report. But you're only 3 months out from surgery, and remember that the healing continues for at least a year. So things will continue to improve.

Do you know what stage the PH is? Have you thought about getting a specialist involved. That's highly recommended by the Pulmonary Hypertension Association. Although some cardios have knowledge in that area, the real help comes from the PH specialists, even at the earliest stages. It might help with those pains and other lung issues.

 

[fyrfytr]

Hey Betty,
Sure wish your report would have been better for you. But just remember you are still healing and it will all come together in time. I am sorry to hear that the heart port didn't turn out like you excepted it would.
I will be 7 months out on the 21st and am still finding things that let me know to slow down. But overall I am doing very well.
Take Care

Dave
____________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical

 

[Kathy]

Betty,

I'm sorry to hear about your problems with your lungs.

I just finished rehab last Friday and I am forcing myself to remain with a home program. I am thinking of signing up to continue. You can go at any time when you are not monitored. I do like some of the machines. I have to compare the price with the nearby health club.

 

[bvdr]

Thanks guys. Of course you are all right that this is still early in the recovery phase and I just might have to have a little more patience. It could improve with time.

Nancy, your suggestion of seeing a PH specialist is a good one. I don't think anyone has really addressed the pulmonary hypertension except just acknowledging that it is there. I still have a left atrial mean pressure gradient of 11 and the right ventricular systolic pressure is 41. I'm not sure if that is enough to cause permanent damage or not. The development noted for the first time on this echo is the pulmonary valve insufficiency, which if I understand correctly is often caused by the PH. I think I'll wait until after my next CT as that may or may not be related. I know Joe has an ongoing battle with this and you are such a warrior for him.

Dave, I am so glad you are feeling well. It is a slow process though isn't it? Sorry I couldn't join chat on Sunday. I had my grandson here and there were just too many interruptions.

 

[Heather Fisher]

Betty,
I'm so sorry the news wasn't better. Of course without the surgery it would be much worse. Like the others have said, you are still in the early stages of recovery. Give it some time. Keep exercizing and use Nancy's suggestion of a PH specialist. I'm just under 4 months out, and although I'm feeling great most of the time there are some days when I'm really tired. My next big checkup is Dec 3. We will see how it goes!!!

Heather

 

[bvdr]

Kathy,

I plan to continue on at the rehab/wellness center as well. I like the discipline of going there and putting in my time. I've lived for too many years walking around unused, high quality exercise equipment at home to fool myself into thinking this time would be different. In fact, I even have found homes for some of my exercise equipment in my model homes.

 

[MelissaM]

Hi Betty,

Sorry to hear the heart port didn't work out as well as planned for you. This recovery stuff is taking a long time, huh? If the tests and procedures bring you comfort, by all means go for them. Sometimes it seems like they are just done to be done, though, and when I have questioned the doc on why certain tests are needed, it is discovered that they aren't necessary. . .just routine. My motto is "no use pokin' what don't need to be poked"

Thanks for keeping us posted!

Melissa (your surgery sis )

 

[LUVMyBirman]

Hi Betty,

Thank you for the update. Sounds like you are moving along very nicly regardless of the lung issues.

When we met in Chicago....my husband was amazed as we all were that you were popping around faster than most of us so soon after surgery.

Your attitude is fantasitc. Keep those good thoughts flowing!

Take care.

 

[tiggerangelgirl]

betty i just wanted you to know that duke has a doctor who specializes in ph and he is really great i cant quite remember his name ,i only saw him at the hospitial but i will get my records and when i find out ill post.you might be able to go to dukes websight and find him.Im praying things will get better for you,dont want you to get down yuor such an encourager to me amd im sure to others i will be praying

 

[Nancy]

Here is a link for doctors who specialize in PH. If you scroll down to North Carolina, two of them are at Duke. This is from the Pulmonary Hypertension Association website:

http://www.phassociation.org/Find_A_Doctor/doctor_list.asp

 

[epstns]

Betty,

I know it is not going as smoothly as we hoped, but think of it as being much, much better than it would have been without surgery. Your progress by the reunion time just amazed me, and I still feel that way -- you're doing really well, you just have another new issue to gain control over.

I'd agree with Nancy -- try for the PH specialist and have at least an evaluation. Then you can benefit from the advice of an expert in the field. That will at least give you some peace of mind that you haven't missed a key item.

Do keep us up to date, please, and stay with the rehab. Glad you've continued to progress!

 

[ccrawford]

Betty - I'm glad to hear from you. Also glad to hear you are making progress, maybe not as fast as you want, but good progress nevertheless. With your attitude and continued participation in an exercise program, I know you will speed up that healing process. These things do take time. Chris

 

[bvdr]

I just got back from my evaluation at cardiac rehab. I showed improvement in all areas but best of all I have less body fat. I won't tell you what it is now because I don't want everybody in"Active Lifestyles" to roll their eyes.

Anyway, I followed Nancy's link and also went to the Duke website as Nicole suggested and have picked out a real nice looking PH specialist (also has good credentials). I'll wait til after the next Chest CT. and just may make an appointment. Who knows, maybe by then this will all be a non-issue.

 

[Georgia]

From your lips to God's ears

From your lips to God's ears

Hey, Betty! Glad you're continuing with Phase III - I did and am really glad I did. Have made great strides in reconditioning.

Hope you get some good answers.

Miss you. Take care.

 

[bvdr]

Hi Georgia,

I miss you too! How's your hubby? Say hi for me OK?

What kind of routine are you doing in phase III?
Are you doing any strength training exercises?

I'm really looking forward to be able to use some of the other machines and equipment. The center opens at 5:30 AM (not that I'll be standing in line when they open) and stays open until 10PM and is only 5 minutes from my house so I can't beat that for accessibility.

 

[Nancy]

Good for you, Betty. It's too nasty a disease to let go too far. Many things can be done now.

 

[bvdr]

I had a very good stress test at my cardiologist's today. It was the routine one that is done when you are about to finish rehab in order to compare the results with the pre-rehab test. We both were very pleased with the results. Rehab was great!

I also had the chance to ask him some of my questions. He doesn't think my pulmonary hypertension is severe enough to cause the amount of pulmonary insufficiency that has developed post-op. He said he was not sure what was causing it but ordered another echo for early Feburary to monitor that and the aortic valve size.

He does not think my mitral gradient will improve. (post-op mean mitral gradient is 11). This probably translates into continued enlargement of the left atrium and staying on my meds to suppress atrial fib long term. I've adjusted to all of them now, even the beta-blocker, so that doesn't seem like such a big deal.

I really like my cardiologist and am so glad he is on my insurance plan. The personality of a surgeon isn't so important to me because your relationship with him is pretty event focused....and you're asleep most of the time .........but for the doctors you see long-term, it really helps to be at ease and free to talk.

 

[Gisele]

Hi Betty!

Hi Betty!

You are three months post op already. Gee, that went by fast didn't it? I really empathize with your issues. My right lung is still causing me pain right up to the top of my shoulder. The vna said I still have fluid. Gee, when does all of this go away? I just want to go back to normal. I am hoping that by the mid to end of January I can slowly start going back to the gym. Of course I will only follow my doctor's orders.

I hope that you improve and that one day you will find yourself back to a normal state. It really helps to have a good relationship with your cardiologist. I love my doctor. He has been wonderful throughout all of my medical issues.


Betty, keep up the good work..............I'm right behind you!

Gisele