First I will let my hair down, something that I do not normally do and let you in on my pity party. ----------------
On the Friday 4 November, three days before I was to fly to South America with Gate1travel for a fifteen day trip, "doing three countries"., a cardiologist told me that I had aortic valve stenosis and that a replacement valve was in my fairly near future. If anyone remembers the old play, "It's Tuesday. It must be Belgium.", this trip was like that. I was traveling with a friend. If I had been traveling solo, I would certainly have cancelled the trip. I was concentrating so much on what my future might hold and frightened about overdoing it, I took on a brand new role. Instead of helping others, I suddenly became the eighty-five year old lady needing help from everyone. It was so bad! It was so demoralizing. Is this to continue in my future? The trip home was horrible, very long walks in airports, an extremely long very cold flight only to find no heating in my home. I called the service, told them that the front door was open, turned on an electric heater , went to bed and asleep. When I woke up, the house was warming. That was Tuesday, a day and a half before the big Thursday, the day of Thanksgiving.------------------------
Thanksgiving was at my house, I being the grandmother. That evening I was exhausted and came down with a cold and chills. This morning, I finally feel slightly better but am still using a roll of toilet paper for my nose. The polite tissues are all gone. I've just spent time looking up an aortic valve stenosis and seeing that it is yet another fatal disease. Good god, help me! Then, I get on to our forum and get wrapped into our mode of sharing and caring. It certainly has worked for me, big time. I am back to my normal sanity and feeling fairly fine. Thank you, all of you, for your candid moments and your understanding and loving comments.----------------------------
Thankyou! Thank you! Thank you!
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jersey-jazz
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Ugh so sorry to hear about this new development and how it took away from your trip. It all gets to be a lot at times. However I got a kick out of your comment about using the toilet paper roll because the polite tissues are gone. Been there done that.
That was not a pity party. Believe me. It was perfectly reasonable and sounds very annoying. I hope at least some of your trip was enjoyable. I can imagine it all feels like a lot!
Totally agree on this forum however. We are a good bunch indeed. I hope you are feeling a bit better now. Onward! As they say.
You deserve a rest after all of that. Letting others take care of you takes more strength than you can imagine, especially when you have been the giver of care for so long. What a gift to allow friends and family to discover the gifts of caring you have nurtured in them.
it’s nice to rant and vent rather than keeping our emotions bottled up. I’m sorry to hear about your heart problem but the members of this forum are very understanding since we are all on the same boat.
I would have probably been petrified to travel! I’m a seasoned traveler, having lived in 6 countries, but since my diagnosis I cringe at the thought of using my passport in case “something goes wrong “. I also blame the lack of estrogen on my flaming anxiety. I can’t bear the thought of stepping on a plane 😩. It’s such a mess we get into. Glad you’re feeling a bit better and hopefully your cardiologist is super and figures something out!
I used to travel a lot before this diagnosis too but now am fearful to go anywhere. How can we get out of this mindset I wonder? We need some motivation - Jersey-Jazz might be it! ❤️
So sorry to hear all that but heh, you've come through, enjoy something today! Think about all the great things in life you've done, and by the way I'm fiercely independent too, but have found that it gives others joy to help! X
Has your cardiologist mentioned transcatheter aortic valve replacement, or TAVR? There have been commercials about this and I have taken care of these patients after the procedure. It is an overnight stay and replaces the need for major surgery. If it is successful the condition is no longer fatal. We have had some patients in their 90s have it done and go home the next day. I don’t know if it can be done in every circumstance, but worth inquiring about it.
DearThreadsgirl------Thank you for the information. Ninety is only five years away from me. So, it is encouraging news. The doctor said very little. She was in a big hurry to get done with her list of patients. Yesterday, I spent the day with Dr Google and am wiser, now and, yes, I read about TAVR. I don't know whether or not I am eligible for that. I live in New Jersey. She told me that I would be going to Morristown Memorial hospital. I intend to find a large hospital , preferably in NYC, that specializes in heart surgery. It appears that I need the surgery in order to survive. So, I hope to have it done in a hospital that houses doctors that know all the latest in this subject.
Always good to have a second opinion, as we frequently say here. My husband had a kidney transplant at Columbia Presbyterian in NYC when we lived there, had many different kinds of specialists and they were all phenomenal. He is still doing well after 16 years.
I think you are very brave and strong 💪🏻. To have gone ahead with the trip, and then have to deal with heating issues, and then to host a family gathering. Amazing.
I hope you’re able to look back on it all and say, wow! I did that.
And I agree with threadgirl’s reply, about looking into the non invasive procedure option for valve replacement. My 84 year old uncle is having that procedure this month. And a good friend of my mom’s had the more invasive procedure three years ago at the age of 80 and she is still going strong ♥️
Dear Mumberly Please tell your uncle that his senior(me) is sending best wishes and sincere players for a good outcome. What is his name?
I was forced to go on the trip because a friend was going with me and there was absolutely no time to change any plans. Believe me, if I were solo, it would've been cancelled in a minute. It was Friday afternoon before the Monday of the Trip. Driving home, I was wishing that I was traveling by myself so I could cancel that day. About acknowledging my Thanksgiving Day with the family, it was so good and they all chipped in and helped out. It was such a fine day and I was very pleased. My youngest son stood at the kitchen sink for a hour and complained that we were manufacturing dishes. Normally, I have my cleaning lady stay in the kitchen and do dishes. When Thanksgiving is done, the kitchen is all done as well. This year, she was not available. This may be the last Thanksgiving at my house. I will continue to be the pie baker, though.,
you’re in my thoughts and I’m sending you positive energy. Oh, what we have to go through! It can be so overwhelming. You’re pretty amazing to have traveled and then kept your thanksgiving plans with your family. I would have done the same because of a feeling of carrying through and not disappointing people
after your challenging trip, and with your medical issues, you had plenty of reason to opt out of hosting Thanksgiving....and you did not. I am so impressed....really have no other words.
Love you. Sending hugs. What a terrible situation. Somehow I hope you enjoyed your trip a little. Keep us updated. This " journey " is full of unexpected surprises isn't it.
I had a valve repair done a year ago the non invasive way and it went well. Had an echo the next morning and then went home. It is a lot to deal wit...Mbc and heart issues. Hope things go well for you too. Theresa
Here’s hoping that just by releasing all of it here you feel a little bit better about it. Things do feel so overwhelming at times. What an inspiration you are for many of us who are doing our best every day to live as best as possible during the worst time. I’m glad your headed to NYC for a second opinion. Such great care there. Prayers going up for you. Positive thoughts only❤️
I shall call you "Braveheart" !!!You went on the trip, good for you!
I try not to dwell on my situation too much or it bogs me down, but hey, I've been to that Pity Party too! As an unwilling guest because before you know it it pulls you in and trys to suck you down the rabbit hole! But I'm NOT Alice, lol. And you my dear, are "Braveheart" !!!
Learn to graciously accept the help. As someone who has always found so much meaning in strength and in doing for others I understand how humbling that is, against our nature. But there comes a time.......
To all of you who have supported me with your kind words of encouragement, ---Thank you! Next Tuesday, 13 December, 11 am, I have an appointment with the doctor who is the head of the Aortic Surgery Section of the building separate from the main building of Columbia Presbyterian Hospital of NYC. A member of staff of Memorial Sloan Kettering gave me the telephone number that was the pass in. I am reading up on the subject. Thank you, again, for all the support that has really and truly pulled me up and out of a morass. I am back to normal or to whatever is "normal" for me.
Again, I cannot begin to thank all of you enough for responding to my plight and plea. I really am back on firm ground, again, thanks to the support from you, my family and part time boyfriend.. He's the one who drove me in to the city on the 13 December and joined me as I faced the doctor. Tom asked the doctor how long it has taken for my heart to be in this state of disrepair. The answer was six or seven years. That is how long I have been a cancer patient with all the chemo and cancer drugs I have taken to conquer the cancer. That doctor is not the one who will proceed with me. He repairs, not replaces aortic valves. He told me that my heart valve is too diseased for repair. I now have an appointment with two other doctors and accompanying medical staff in two weeks, on 9 January. I will be fine, even with a pig's part.
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