Alive but worried!

michka · 02-06-2009, 09:25 AM

Hi Everyone,
I went for my breast reconstruction surgery by gluteal flap (buttocks) and almost never came back. The operation lasted 7, 5 hours.
I had an internal hemorrhage that they didn’t see for hours and although I kept saying I was feeling worse and worse, they didn’t understand. This went on for 3 hours. I was getting weaker and weaker and at the end I could not speak or even raise my hand to ask for help. Strangely, I was very calm. I realized I was about to die and thought of my loved boys and companion. I was so weak and my brain was working so slow that I had no fear. And then a miracle happened. A nurse from intensive care walked by to ask her friend nurses something personal. She understood what was happening. Then within 2 minutes I had 5 doctors and nurses around me and I fainted.
I had a 2 litre transfusion which must be half of my blood volume. (red cells plasma and platelets).

This happened 12 days ago. Now I am home. I feel very very tired. I am so afraid of the consequences of this massive transfusion.

I have 2 questions maybe someone can answer:
Can Faslodex have accelerated a hemorrhage? I ask this question because they are puzzled and did not really find where the hemorrhage started.
I am on Faslodex since November. I have no metastasis but I could not support Aromasin very well. My onc suggested switching to Faslodex.

Worse: I read people with cancer who had a transfusion had much higher recurrence rates.
Anybody know about this? I want to know the truth.

I feel very down but I can tell you I am so happy to be here on our forum,
Michka

chrisy · 02-06-2009, 10:03 AM

Wow, what a story!

Faslodex can cause irregular vag bleeding and in very rare cases blood clots; but it seems to me that even those would not contribute to hemorrhage.

Your other question, on the transfusion/recurrence issue, I googled it and there is some controversy over this but I saw references to some meta-analyses that did not find there to be a statistically significant increase in risk of recurrence. Maybe this is one of those things that is a persistent rumor with not really any basis in fact. You said you want to know "the truth"; I think maybe there is no answer for sure.

I admit, I didn't do a WHOLE LOT of research before responding to this post, so feel free to take the comments above with a grain of salt. Hopefully someone with more knowledge (or more adept at the research!) will have better input.

But the reason I felt ok responding even with so little "data" is that I didn't want to overlook the actual truth about what you described: you nearly died as a result of an undetected bleed with an unknown cause...then by a stroke of luck (I would call it grace), it was discovered by accident and you were saved.

Even you called it a miracle, and I agree. Maybe it's ok to just consider that the miracle was a pretty powerful one...and believe that it holds more power and meaning than some very thin data on possible complications in the future.

Much love
chris

Shobha · 02-06-2009, 11:11 AM

I don't have the answers to your questions but I agree with Chrisy that the miracle that helped you come through the surgery is also an indication of the future. You are meant to stay alive and thrive.

Sending my prayers and positive thoughts your way.

love,
shobha

Faith in Him · 02-06-2009, 11:20 AM

Yes, what you experienced was truly a miracle. I am glad you are now home and resting.

Take care,
Tonya

ElaineM · 02-06-2009, 11:28 AM

Wow !! What an experience. Just for future reference---------Things like aspirin and even vitamin E can cause more bleeding during surgery. We can get a list of things that thin blood and should be stopped before surgery on the internet. I had major emergency hip surgery in 2004 after an accident. Needless to say I wasn't planning on surgery and had been taking vitamin E. I needed two pints of blood during the surgery, because I hemoraged.
I am sending positive vibes for your recovery. Take care.

schoolteacher · 02-06-2009, 11:33 AM

Michka,

I hope you get to feeling better. I believe you experienced a miracle too. You were one of the first people who responded to my post over a year ago, and I am very grateful for that. God Bless You, and please let us know how you are doing.

Amelia

StephN · 02-06-2009, 12:25 PM

Dear Michka -
I am amazed that the medical team did not take your growing weakness more seriously. Perhaps they passed it off as coming in and out of the anesthesia? (Which is something to keep a close eye on as well!)

Anyway, this is a perfect example of WHY we need an advocate right by our side after any surgery or invasive procedure (remember my colonoscopy episode?).

Seems to me that a complaint to the hospital head may be in order. Make sure this is all in your records and ask for copies.
But for now save your strength for rebuilding your body after this frightening experience. Even though you were not frightened as you weakened, looking back now would give anyone cause for anxiety.

Rest well - April in Paris is not far off!

tricia keegan · 02-06-2009, 03:45 PM

Michka, what a horrible and frightening experience for you, I hope your recovery is speedy.

MJo · 02-06-2009, 05:33 PM

First, I am so glad you survived. Second, I agree with StephN. For now, rest and get your well. Once you're better, you might want to complain to the hospital. Possibly, you'll be mad as h--l. This was a very scary story.

Louise O'Brien · 02-06-2009, 06:58 PM

First of all - I have to agree with everyone else. Call it miracle, call it luck - the right person was there at the right time and you survived - and in my world, I'd say that's a miracle.

I just had to respond to this thread because I'm just three months out of reconstruction surgery. An eight hour operation. The one thing I remember is the number of times I was injected with Heparin - a blood thinner I was told that would prevent blood clots. I lost track of the number of times before surgery - and for days after surgery - that a nurse would appear at my bedside for that injection. At least twice a day. I was foggy - it could have been more. I remember it because for some reason it's the only injection I had that was a bit painful.

Then there were the stockings I hated, put on my legs immediately after surgery - also aimed at preventing blood clots. Had to wear those for several days.

So I guess my first question is - did you get Heparin?

And I'm going to be the devil's advocate here because I have had legal training: one of the biggest reasons hospitals will claim they had "no idea" why something went wrong with a patient is because they want to avoid any admission of liability.

Why would they say... oh gee, had we only been more vigilant, given her x number of drugs etc. etc. ??

Much safer to plead ignorance. Hospitals don't want to be sued.

So Steph is right - you need to ask some tough questions.

Having said that - I still think you experienced a true miracle. Your guardian angel was looking after you. It wasn't your time.

Becky · 02-06-2009, 07:25 PM

I really can't add more to the responses you've already received. Welcome Home!!!!

Jackie07 · 02-06-2009, 10:32 PM

Theoretically blood transfusion should not have anything to do with recurrence.

So glad you are O.K. now. Watch for 'post traumatic stress disorder' afterwards and please rest well.

michka · 02-07-2009, 02:27 AM

Thank you all for your warm support.
I got a shot of blood thinner the night before the operation. Could Faslodex be incompatible with blood thinners. I do not understand what it says on the Faslodex warning. Something like "if you take blood thinners, tell your doctor". What does that mean?

Yes, I know they didn't watch me right. I was in a recovery room plugged into the monitors. They had several ways of seeing I wasn't well. I have no intention of suing anybody but I want the truth. By law, I can ask a copy of all the internal documents. I will do that because they are afraid to talk. I consider that everybody can make a mistake. These doctors and nurses have a tough job and we love to find them to help us. What gets me upset (and now a little mad) is the tentative to cover up. It's a dangerous attitude for the patients. The best is to put everything that went wrong on the table and correct the process or the training.
I was not really interested in my new breast for days. Now I am happy it is done although it looks terrible; like if they sewed half a watermelon on my chest. I know it is going to improve in the coming days. I am supposed to have another 2 hour operation in 3 to 4 months to do the final shaping. I hope I will be courageous enough to go back!

Sheila · 02-07-2009, 05:55 AM

Michka
First let me say how thankful we all are that you are OK...and yes, it seems like you have many angels sitting on your shoulder and carrying you through this....I do agree that you need to get to the bottom of this BEFORE your next surgery...they will not want to give you info due to fear of a lawsuit, but you need to get it for your own peace of mind, and to help prevent whatever went wrong from ever happening to another. Please know you are in my prayers and thoughts for a speedy and uneventful recovery....sending you a big hug Michka...

Debbie L. · 02-07-2009, 08:58 AM

Michka, I'm glad that you are (mostly) OK but sorry to hear about your ordeal. It will take awhile to get those red blood cells back to normal levels, plus you're recovering from surgery so I hope that you'll be patient with yourself while you heal and your energy returns. I know it's easy to say that and hard to do sometimes. But your energy WILL return.

I looked around a bit to see what I could find about your comment that you were worried about the consequences of the transfusion, related to recurrence. I did find a few studies and discussions that talked about increased mortality, but not about recurrence. And not all even found increased mortality. The ones that did all said that (duh) they suspected the increased mortality had nothing to do with receiving the blood itself but rather with the REASON for needing the blood. So you're over that hurdle (the hemorrhage is no longer a threat).

I'm curious about the amount of blood that you received. You said 2 liters which in the US would usually be about four bags (units) of whole blood. That sounds like a lot but in medical language would probably not be considered a massive transfusion. Massive would be for example, a nasty car accident with long surgery where someone's entire circulating volume would be replaced many times.

Also, you left out the part about going back to surgery. They must have taken you back to control the hemorrhage, right? What did they find as the source of the bleeding?

How is the arm pain?

Love and healing thoughts,
Debbie Laxague

michka · 02-07-2009, 09:51 AM

Hi Debbie. Thank you for the reassuring words. I know I got 8 bags of red cells and 5 other bags of platelets and serum. But is a US bag the same as a French bag? the best indication is that it represented 50% of my blood volume. So not as much as what you described for bad car accidents. My pulse had gone down to 5.3.
Yes, I went back for surgery for an hour and a half. But they say that it was unclear what broke first .... I agree that I must understand the reason before any other surgery. I skipped the second episode which was 48 hours after the transfusion when my blood pressure reached 17,5 and my pulse 140. I thought that was it again. But then they were really watching me and brought my heart beat down. It happens after transfusions they said...I have to recuperate now and when my head will be working better ask them for my reports and files.
Michka

Debbie L. · 02-09-2009, 08:32 PM

Michka, I don't know about volume of bags of blood in the US vs. France. Here, whole blood (with serum, etc) is a little under .5L I think, while packed cells (just red cells - more commonly used) is just under 250ml (1/4 L.). But I'm not an expert. I'm relying on (often-faulty) memory.

I think that blood pressure measurements must be different in our two countries also. But it's clear that you were in big trouble. I am so grateful that someone caught it and you are (mostly) okay. You are allowed to give yourself lots of space in this - you know that, right? Space/time/patience for physical recovery, and space/time/patience for emotional recovery. It's a big thing to have come so close. I know that you'll be patient with yourself and allow emotions and thoughts to release so that you can recover and grow, in all ways.

Healing thoughts coming your way, with love,
Debbie Laxague

harrie · 02-11-2009, 12:43 AM

Michka, wow that was scary!! So relieve you are fine now and at home!!! Whew!!
Is your reconstruction similar to the DIEP or the TRAM?
Maryanne

michka · 02-11-2009, 03:57 AM

Hi Harrie! First: any news from your biopsy? I am thinking of you.
My operation is called a SGAP reconstruction. It is like a Diep but the tissues are taken from the upper part of the buttoks. The upper part of my body and my stomach were to thin and because of the neuropathy problems in my arm, the surgeons didn't want to touch my back. This was a good option for me. I still have to find out why I bled though. I am going back to see the surgeon tomorrow and will discuss that.
Keep me informed when you have the results.
Michka

harrie · 02-11-2009, 03:21 PM

Michika, I was told the results will take 2 wks. So have about 1 1/2 wks to wait.
As you can see, I had the DIEP. My surgery which was a combo bilat mastectomy with the DIEP took about 15 hrs! But I recovered nicely and had not complications.
How are you feeling?
Maryanne