Location: Home of the Pirates, Steelers and Penguins
Posts: 13,426
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Height: 5'2
Trish, I also didn't realize there was so much to be done to prepare for TAVR either. I guess they have to be sure all circumstances are just right for it. When I went to the ER it was I had trouble breathing. I suspected it had something to do with my bad valve because they had told me this and possibly fainting was a sign it had progressed. Before I knew it the cardiologist who performs TAVR came into my room and started to discuss the things that had to be checked to ascertain that I was a candidate. Another cardiologist came into my room and told me the opening to the valve is closed to the size of a pin hole and the blood can barely get through. This sounds pretty urgent to me. My cardiologist was not in to see me but he and all the ones that were in to see me are all from the same group who are associated with the hospital. I remember several years back I was told that TAVR was only done in 2 Pittsburgh hospitals but our local hospital was planning to start doing it. At that time (it was before the pandemic) I was not having symptoms and I decided to wait until they started doing it in our hospital. It was in the back of my mind as something to be done in the future but now the time has come. When I was in the hospital there were several doctors who came to my room. The only one I had seen before was the one who actually does TAVR. He's done a catheterization before and I've seen him in his office. They would come into my room, listen to my heart and lungs and say a few things, then off they would go to the next patient. 5 minutes tops. My head was spinning trying to understand and remember everything and who was who. If I had known my teeth were going to be a factor I might have not neglected them. But during the pandemic the past 3 years I have been staying away from any medical situations and I was lucky I didn't have any emergencies during that time.
This is not a case of you go to the hospital they fix you up and you come home. Similar to when you went to the hospital and ended up going thru cancer treatment.
I've had my eggs and toast. I don't know what we are having for dinner. I need a few things from Walmart and want to go today or tomorrow and avoid the weekend. But there's supposed to be rain today so we will see.
Recently I have been drinking a lot of water and for some reason I have lost weight, perhaps of course because now I move more, but all this is strange
Carol Sue How long will you have to be in the hospital once you have the procedure done? Is the recovery once back home a long recovery? I understand about getting confused with so much info when in the hospital when you see so many different doctors. It is good to have a surgeon that you trust.
My DGS text the other day to see how I am. When I told him about the maintenance treatment plus one year on that pill, he wrote back and said he thought the doctors were milking the situation, but I don't think so. I think they go by that CA 125 reading and they are looking for it to come down to a lower number. I don't know what number is. It dropped 130 pts this last time to 301. I trust both my oncologist and surgeon not to overdo anything that would do me harm long term. I admit I have question about the side effects of the maintenance and pill but that is where you have to do the best you can and trust to take care of the rest. I think at our age you and I understand better now than I did when I was younger.
We are having pork chops today. DH has remarked about that he sees now how I always had to figure out what to cook each day. I think he appreciates all those things I used to do. I pray I can get back to doing them again soon. I want to take it easy on my eating today because I get my last chemotherapy before going on maintenance next month. I don't know how tough this last treatment is going to be as it could be 2 meds or 3.
Location: Home of the Pirates, Steelers and Penguins
Posts: 13,426
S/C/G: 217/176/142
Height: 5'2
Trish from what I've read I will be in the hospital 1-3 days, at least overnight. Recovery time at home can be 1-2 weeks and 1-3 months for complete recovery. Open heart surgery is much longer.
In your case, I think I would prefer the doctors to extend treatment to be sure there is not a reaccurrance. DHs first wife had a different cancer and it was years ago, but they told her twice it was gone but it came back both times.
Some day you will be back in the kitchen cooking dinner for both of you.
Carol Sue I pray you will be able to have the procedure that it best for you and easier. I can see why they are being so thorough with preparations. I have heard of people having cancer again and I pray I won't be one of them if I do the maintenance and a year on the pill. My doctor and team nurse have told me they want to cure me not kill me or make disabled. I think I can trust them and believe that is why they test me so much to be sure all is going well. Them being who pray for me and encourage me to pray then it is easier to trust God to guide them because I believe they pray the same thing.
These are the type of doctors we want.
I am dressed and ready to go. I would love to walk in with a walker but it is easier for DH for me to use a wheel chair. I will wait to till maintenance which will be only about 45 minutes to an hour to use the walker.
I did it their way this morning by having my protein shake before I go. I just pray all my numbers are good and I can get the treatment over with.
Location: Home of the Pirates, Steelers and Penguins
Posts: 13,426
S/C/G: 217/176/142
Height: 5'2
Trish, I pray that all goes well today. I understand the ease of using the wheelchair for now. But you will get back to not needing it.
I slept better last night. Fitbit gave me an 80. I've been having 70s and a few 60s. All vitals are good. Today I feel stronger and I'm walking better. Twice recently strangers have asked if I'm ok. Sometimes when walking I'm a little wobbly. When I first stand up I hesitate before the first step. I hold onto things as I walk by. I'm probably borderline ready for a walker but I hate the idea of carting it everywhere. I'm hoping to increase my mobility so I don't need it. At the casino when I walk from the food court to the ladies room there's nothing to hold onto. I have to walk past the security guard and sometimes I'm wobbly. I sometimes wonder if he thinks I've been drinking. There is a bar in the food court.
Yesterday we went to Texas Roadhouse and I forgot to ask for no seasoning on my shrimp. They use a lot and i really like it better unseasoned but i ate it. Nothing happened.
Today is Friday and we usually go to Rodneys. I don't know what DH will want. There's not a lot for me there that can be low sodium. I might get plain wings no seasoning or sauce. I would really like wedding soup but that would not be a good choice.
I think I want to sort my clothes in the laundry room today. Some will be donated. I also want to use my vibration platform and exercise. Just for leg strengthening. I don't want to do any intensity or cardio until my heart is fixed. I do some exercises in my recliner, arms and legs.
Is your DH doing laundry? DH does some and i fold and put away. He does jeans, towels and whites sometimes. But he is not allowed to do my shirts and tops. When i was still working he did all the laundry, vacuuming and mopping. Very helpful. He does not dust, etc.
Hope everyone is doing well. It is so HOT here! Hubby got great news today. Went for his annual check up. His blood sugars are so good that he will only need to take Metformin only once a day instead of twice a day. He will still be on Januvia and Mounjaro, but that is a step in the right direction. His fasting blood sugar have been between 89 and 110. Mine usually is in the 120-135 range. I am hoping to get mine more under control too. I am still on Victoza. I was worried about the cost of it since I am on Medicare now and I have a drug supplement, but I did not want to have to pay for these meds since they are expensive, so the Pharmacy put it on the 340B plan and I paid out of pocket and it was only 11.00! I was happy about that. I still take Metformin twice a day. Anyway hope you all have a wonderful weekend.
For those who do not like plain water, I stumbled across this company called Skinny Syrups. They do sugar free syrups that you can add to your water and they do some mixes to add to your coffee. Right now I have Unicorn and Cotton Candy. I have other flavors, but have not tried them yet. I put 1 tablespoon in 20 oz of water and it was tooooo sweet. So I put 1 teaspoon and 1 pack of True Lemon powder and it is perfect. Some people mix them with other sugar free packets that you can get at the stores, I do not have the time to do all this, I just do the syrups. Anyway just thought I would put this out there.
Tam Tam alway good to hear from you. That is good news for your DH good report especially with blood sugar. Y'all are on the same woe so I'm sure you will do as well. It is definitely hot down here in the south. A nurse at onclology told me today that the weather man said we are supposed to get a cold front in a few days down from 107 to 102. Really? LOL
While I'm thankful for my prescription insurance sometimes they are still expensive. My sleeping pill I take ordered once a month by oncologest will have to be switched to be ordered by my primary next month because in order for my insurance to pau for it has to be on a 90 day or 1 year order. Thank God my pharmacy was able to find a coupon for me to get it for a lilltle ove 8 dollars so I could get it this month.
Carol Sue Glad you are sleeping better. Don't put off using a walker. You are like me, you won't use it for ever but you may need it until after the TAVR. It is much more important to be safe as you could really get hurt if you fell. You don't need a broken bone in the midst of all you are going through. I put it off a long time back when I hurt my knee and wouldn't go any where, but once I started using it I was so glad I did. I was able to go so many places when kids came to visit that I could not have done if I had not used it. It was so nice when I could go out to eat and go enjoy a museum when DH DS and his DD came to see us. I always had the goal to get rid of it as soon as I could and I did get back to walk without it and walked normally again. This morning I saw 2 people walk out of the infusion room... the first one was walking with a cane and I told DH that was my goal that I will get back to using my cane. Then I saw a woman walking fairly slowly but steady with nothing and I said "No that is what I want to be able to do". I can't see you ever getting used to using a walker all the time. You and I are too much alike. We will always be working to get better because we want to live the best quality life we can until our last breath of life.
I forgot to tell you this morning that my FBG was 211 after taking those 10 steriod pills I had to take last night. Thank God I don't have to take them during maintenance. So thankful I knew it was the steroids. I knew I had not had anything to cause my blood sugar to go up that high. It will be interesting to see how long it affects my bs.
I was able to get my last chemo infusion. When my team nurse walked in the door with my info and turned the pc, I said to her "Don't tell me I can't get my infusion". She said she was nervous about looking at my lab work but everything was in range for me to get my treatment. The treatment only took 2 hrs today plus the flush wash they do of 5 minutes between the 2 medicines and 5 minutes at the end. The longest wait time was when the infusions nurses realized how much weight I had lost since my last infusion and they said I needed a lower dose of the chemo meds. So they had to wait for my team nurse to lower it. My infusion nurse said they didn't want to overload me on them. Oh weight was down to 169.8 the lowest I've been in years. The surgeon told me the fluid would come off after the surgery but I was wondering. But evidently it is starting to come off so I am starting to see signs of good things happening.
I feel better about the maintenance treatments since I now know that the dosage of the 30 minute medicine dosage will be adjusted to my weight. Plus I asked how they know what is going on and the CT scan shows if the treatment is or isn't workng better than the CA 125 does. So today has been a good day over all.
Last edited by pattygirl63; 08-11-2023 at 07:19 PM.
Location: Home of the Pirates, Steelers and Penguins
Posts: 13,426
S/C/G: 217/176/142
Height: 5'2
Trish, I was certain you would show a good loss once the fluid started coming off and you might lose even more with the rest of it coming off. We are back to weighing the same again. I can tell how your spirits are lifting! I
haven't been in the 160s for maybe 30 years.
When I took the steroids it used to take 5 days for sugar to come back down but this time it took 10 days. I think it depends on what kind they are. I felt terrible when my sugar was high. I had trouble concentrating and vision was blurry. I didn't tell DH but I have to take them 2 more times. But it's to extend my life.
I packed up some clothes for Goodwill and boxed some I'm not sure about. I might wear them again sometime. DH is tall and he installed the rack too high for me. He did the same with the food shelves. I have to ask him to get food down for me or stand on a chair! Yikes No!! It doesn't enter his mind that I can't reach. Or maybe he wants me to need him.
DGS called me today to ask for the Apple pie recipe so his mom can make one. He is a good kid and he makes me happy.
T
We are at the casino and I am walking pretty good today. I'm ready to go home.
Tam Tam I am glad to hear your husband's blood sugar improved and yours too. I love water. I drink it plain mostly but i put it in the freezer to get it icy. Sometimes I put some sugar free electrolyte mix in it that I buy from Walmart. . I buy that True Lemon too and like it.
Looks like we are all doing well.
Last edited by Wannabehealthy; 08-12-2023 at 10:08 AM.
Location: Home of the Pirates, Steelers and Penguins
Posts: 13,426
S/C/G: 217/176/142
Height: 5'2
Scale is up a pound today. No big deal. The water pill will take it back down. All vitals are good. I slept good but not long enough. If I wake up early I take the water pill to get the peeing out of the way in case we want to go somewhere.
I had tea first thing this morning but I'm trying coffee now. I have not been able to drink it since the hospital. I don't know if I'm better off without it. It does have medical benefits.
My scale is rechargeable and it went dead this morning. So when I did finally weigh it was after my tea and scrambled eggs.
I was concerned because the results from my bloodwork didn't show up on my Quest account. If the doctor doesn't get those results my scan would probably be cancelled. So I was happy to see it showed up today and there was a note that the doctor requested that it be refaxed. The results looked good to me. Nothing in red. I am assuming that the doctors office would not be open until Monday. Tuesday night is when I have to take the steroids.
I spent the morning reading online of ways to combat the blood sugar spike. I made a list of things I want to buy at Wal-Mart on Monday. One is Chromium Picolinate. I tried it years ago for weight loss and nothing happened but I will try it for this. Today I will start taking my Vit D again. I will also buy some cannoloni beans, canned salmon, frozen edemame. I don't know about bananas because of the carbs/sugar. And try to stay active. I like these foods and if they don't help I don't think they will hurt. I have to hold Metformin because of the dye but can take it after 48 hours. I will do the best I can to control this.
Carol Sue My FBG was still up from the steroids. BP was okay yesterday but was up today. Primary was right when he told me my bs and bp would be all over the place during all of this. I will have to see if I am taking chromium picolinate. I used to take it and it did lower my bs. I used to take garlic pills for the bp and I could never tell if it worked or not.
I too slept good last night. I only had to get up once during the night to go potty when DH came in to go to bed. I went back to bed and didn't get up until after 8 am. I guess cutting back on water after 8 like you do a child works. I ate good and had some applesauce with Greek yogurt and a few pecans along with my protein shake. I didn't sleep long when I came to the recliner, but I seem to need a nap now. Maybe because I've done about 15 minutes of exercise this morning. I did my core exercises I used to do in the bed, wall exercises, squats holding on to sink and dumb bells to get my arms and legs stronger. I have to go get lab work Friday and I want to use my walker and leave there and be able to go Friday to get my driver's license renewed. Then I have to go see the surgeon on the 23rd and back for lab work and a CT scan on the 24th. I want to be using my walker to do that as well especially when seeing the surgeon.
Guess I better go get that nap. Hope everyone has a nice weekend.
Location: Home of the Pirates, Steelers and Penguins
Posts: 13,426
S/C/G: 217/176/142
Height: 5'2
Trish, I hope you get to start using your walker for your medical appointments instead of a wheelchair. The exercises you do should help build your strength.
Its getting dark and they are predicting storms for a wide area including our. county so we won't be going anywhere. Tomorrow I want to go to Wal-Mart and talk to the pharmacist. Today I looked at the pills I picked up to take before my scan on Wednesday and I don't understand the instructions. When I picked them up they asked if I had questions for the pharmacist but I assumed I would understand. I have to take them Tuesday night and Wednesday morning for the scan on Wednesday. I think a lot of my stress over this is due to not really understanding everything. I guess I'm an old lady after all! I will feel better knowing what's going on.
Carol Sue I hope you are able to get pharmacy to explain your medicine more clearly.
I slept good last night. Only woke up once to go potty and didn't get up until after 8 am. I think exercising may have helped with that.
Not much going on here except I'm still sleepy. DS says that is the steroids and she reminds me my body is still healing. My FBG was back down to 112 this morning but bp was still a little high for me but it is caused by the infusion medicine they gave me. It is the one they will probably continue using for maintenance. So far bp is in what they call normal but just not normal for me.
Location: Home of the Pirates, Steelers and Penguins
Posts: 13,426
S/C/G: 217/176/142
Height: 5'2
Trish my blood sugar stayed in the high 200s for about a week then slowly dropped down. We must take different pills. The pharmacist was very helpful.
I wanted to put a roast in the slow cooker but now there's no time so it is in the pressure cooker. That only takes 90 minutes or so.
I slept for 3.5 hours then I got up and came out here and got online. Went back to bed, took a Tylenol and slept 3 more hours. I think maybe Tylenol is the answer. I can't take anything that makes me groggy.
I could not find Chromium Picolinate so I will order online. It might not be here on time.
________________________
I ordered the Chromium Picolinate and it should be here Tuesday. I ordered with a couple other things I had in my cart.
My roast is almost done. DH said he didn't want potatoes. There are baby carrots in the pot.
Last edited by Wannabehealthy; 08-13-2023 at 03:13 PM.
There is a bar in the food court. 
We are back to weighing the same again. I can tell how your spirits are lifting! I
I love water. I drink it plain mostly but i put it in the freezer to get it icy. Sometimes I put some sugar free electrolyte mix in it that I buy from Walmart. . I buy that True Lemon too and like it.