Abdominal Aortic Blockage

My mom has suffered for several years with extreme pain in her legs , hips. She has gone through many many doctors and no one has found anything wrong with her. She was almost to the point of not being able to walk at all. Just this last May after getting routine bloodwork done , her numbers for her kidneys came back abnormal. Her blood pressure was extremly high. Her doctor changed her medications and hoped it would change. It got worse when they tested a month later. They then wanted to do a balloon test to go through the artery in her leg to the left kidney to put in a stent. When they tried they ran into a blockage. After doing an MRA they found that her Abdominal Aorta is blocked 95% - 99%. It has blocked the left renal artery and 50% of the right. She has now lost her left kideny. They say it is dead. Her blood pressure is still sky high after being on 3 BP meds. This is because of the Kidneys.
On 7/31 she is having surgery to take out the blockage in the aorta. They are going to cut out the bad part and replace it ?? While the doc is in there he wants to try and clear out the right renal artery.
She will be having this done at the Nebraska Medical Center. Can anyone share anything with us on similar experiences? My family would like to know more about this as we are very scared about all of this.
Thank you
Traci

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I can imagine you are all very scared. The abdominal aorta blockage and kidney blockages are not fun.. but it's not a death sentence. My abdominal aorta was 95% blocked too. I also had blockages to my iliac arteries - these are the arteries that branch off at the top of your legs and go down into the arteries of your legs. There are a bunch of stories here about the graft they use to replace the damaged/blocked part of the abdominal aorta. I just re-read my post op report and found out that my surgeon also removed part of my aorta and sent it for biopsy. Apparently they do that during surgery to find out how much of the artery is blocked and to make sure they replace it with the graft.
The operation itself is not an easy one. It's scary and you will need to remember that this is a disease. One that cannot be cured but can be controlled and your life can still be full....although I will tell you now that your mom will need to find a new kind of normal. All of us seem to still have problems even after the surgery, but all of us will also tell you that it's still the best thing we ever did.
I am so sorry that it took them so long to figure out what was wrong with your mom. The odds are good that once they get in there they might be able to clean out the arteries going to her kidney's. The human body does a lot of amazing things and it might really help her. I can tell you that even after surgery I now have high blood pressure and recently found out that I have a blockage in one of my kidney's. But I also have what they call "collateral" veins that have grown to make up for the lack of blood flow going to my kidney.
I know that you and your family are scared, but you found the right place. There are many here who will come along soon and post, I am sure. Ask any questions you want. While we aren't doctors, we can share our experiences and try to calm some of your fears.
Welcome aboard. I wish you didn't have to be here :)

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Thank you !! I just stumbled upon this website the other day. It was really helpful to me to read stories from others with the same problem. The surgeon has said she will be in the hospital 7-10 days and couple of those will be in ICU. Was that similar to yours? You also mentioned that you all still have problems after surgery. What kind of problems ? And I'm guessing it takes a couple of months at least to feel good after this sort of surgery? Her surgery was scheduled yesterday, it will be on 7/31. Where did you have your surgery , what state ? We are in Omaha Nebraska.

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Yep. I was in ICU for 4 days and then 3 days in a regular room. But I also got pneumonia so it took me a bit longer to get out of the ICU. Normally it's just a few days.. but at least 1 week in the hospital for sure.
Most of the people here still have problems with more blockages coming up or the graft it self occluding, (getting blocked again), and a few have even had to go back and have another major operation, or a smaller one to put in a stent and that kind of thing.
Most seem to feel really great after the surgery - except for the incision pain, and the pain in my legs was completely gone. Now 2 years later they bug me sometimes when I am walking, which is why I said that you are never cured of this disease.
My incision bothered me for more than a year and a half... and still does to some extent.
Does your mom also have to have incisions cut into her legs? Did they tell you anything about that?? Or did they just tell you she needs the graft?
I am in Arizona. I am lucky I had a great surgeon but my surgery wound up being an almost emergency. I had an infected couple of toes... and was about to lose them because of how bad the blood flow was.

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Hi Tiduryee:

I know this is scary - it's scary if you're going through it and scary if it's a loved one going through it. MsMichie and I have similar stories. My aorta was 100% blocked and my walking distance was down to a few feet by the time I was diagnosed. I had been having problems for nearly 6 years and it was all put down to a "bad back".

I had the bypass in January of 2011. I can't tell you it's a walk in the park - it isn't. But the pain is managed extremely well. You get an epidernal (sp?) before surgery and then lots and lots of pain meds on top of it after surgery. I spent 3 days in ICU and 3 days in a room before I was sent home and I can say I was never in pain. I was ready to be moved to the floor after 2 days except there was a complication that had to be taken care of. Even at home, I was uncomfortable but never really in pain. The incision for this surgery is right down the middle of you and then there are two incisions about 3" long just where your leg meets your body (the groin area). It was a little bit of a challenge learning to work around that big incision (you have little stomach muscles), but everything heals incredibly fast. My incisions doesn't bother me at all except for once in a great while I'll get a little part that "speaks" to me.

That bypass occluded (plugged up) within 6 weeks of the first surgery so I was back where I started. I hung in there until September of 2011 when I had the bypass again at a different hospital. Again, I was in ICU for 3 days and on the floor for 3 days. But again I was ready to be moved from ICU in 2 days except for the complication by body delights in after a big surgery. This incision was a "side" incision, running from just under the last rib on my side to just beyond midline under my diaphram. (the two incisions actually cross there). This one was much easier to recover from but it comes with discomfort also. I never, though, never was actually in pain. The ICU nurses kept telling me to press the morphine button and I kept thinking it was the call button - I just really didn't need it very often.

What kinds of things go wrong after? The most common is occlusion - small or large. My second surgery worked and I was out of pain completely for 3 months and then a portion of the graft occluded and I needed a "re-do or the re-do" to fix that part (just a little surgery - couple of hours). There are many, many incidences of a graft staying free and clear for years and years, though, so it just depends on the luck of the draw.

But the bottom line is - in order to really live, we need to be out of pain as much as possible. And, for me, anything was worth avoiding double amputation. Even now I'm not out of pain - my walking distance is again down to a block or so. So, would I do it all again? Absolutely.

Keep asking questions - we're here for you and your mom. We know how hard this is and also know that the more information and stories you have, the less alone you feel.

Sharon

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Thank you both for all your information. It is so great to be able to hear stories and experiences. It does take away a lot of the worry. I know this will be no walk in the park , but I at least feel a lot better about it. I have been sharing your stories with my mom as well and it has calmed her fears as well. I wll get her on here too so she can have the support.
They have not talked about having to cut into the legs at all. Just the abdomin. And I believe the surgeon said it would be a top to bottom incision not left to right. She had a c-section with me 39 years ago and she has also had a hysterectomy (SP) as well. So she does know what abdominal surgery feels like. I'm sure this will be a lot more intense though.
Her blockage in the aorta is like 98% blocked. But amazingly she still has decent pulse in her legs. She has a lot of pain in her legs and hips. She is diabetic which doesn't help either. I am really worried about the kidney issue. I am hoping they will be able to fix that artery when they are in there. She has been having pain in her legs, hips , and back for over 10 years and they are just now figuring out the problem. Very frustrating.

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It is very frustrating when you just want to know what is wrong with you and all the things they try don't do anything to help. But once they figure it out, even if it's a scary thing it still is better than not knowing.
I am betting that your mom's doctor will be able to assess her kidney's much better when he/she is in there doing the bypass. Medical Science can do so many things now that it is amazing. It's good that your mom has good pulses in her legs... Kalonkini and I had just about NONE which pretty much was a death sentence for our legs if we didn't get the bypass done.
Keep asking questions or just vent anytime you want.. we are here for you and your mom and I hope she joins up soon!!

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Your mom having good pulses in her feet are wonderful. Our bodies are so amazing. She probably has grown all these extra arteries to get blood to her legs (collateral system). I've got a huge one because I never stopped moving even when I was in pain. Somehow I think maybe your mom is like that, too.

Tell Mom that things are so much better now than they were when she had her surgeries. I remember my girlfriend after her C-section about 45 years ago and how hard it was for her to even get out of bed. I never was in that much discomfort - especially right after surgery. In fact, in the ICU, they asked me to sit up the first time and I grabbed the railing and sat up - really, really slowly - while the nurse said "oh, you can't .....". Once I was sitting, I looked at her and said "oh, wasn't I suppose to do that?". She finally snapped her mouth shut and told me that it was ok but most people can't get close to doing that. So, it's not so bad with good drugs. lol

The docs are going to have full access to the kidney arteries during surgery. My second bypass they actually clamped the aorta off just above the kidneys because they needed all the room they could get below that artery split to insert the bypass. Have Mom ask her surgeon to draw her a picture of what he's going to do. My surgeon did that and also showed me the pictures about the bypass from his medical texts. It helped sooo much.

But you know what helps the most? That drug they give you at the same time they are putting in the line for the epidural. This is the "amnesia" drug that wipes all memory of the operating room or prep or everything. While I was in the holding room before my first surgery, my doc asked if I was scared. I told him maybe not so scared, but I'd welcome any valium anybody may have in their pockets. That's the last thing I remember until I woke up in ICU That stuff is worth gold!

I hope mom comes and says hi. We'd love to meet her.


sharon

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Well .I believe these wonderful ladys have about covered it all.I had my by-fem done in 09 i had to go back last summer and have my graft opened up with angioplasty ( ballooned) and it's blocking off again on the left side and right toe so i'm going back to my Dr. in the morning to see what has to be done now.But these ladys are correct in everything they told you.I had a bit of a hard time with recovery ,it took me 2 to 3 months to be able to get around without being so weak and pale .i tried to drive about a month after surgery for a meeting to shut my job down and it's only a 5 minute drive if that but i was just to weak to be out so the healing process is different for everybody. She probally wont have any food for most of her hospital stay ,so it'll take awhile when she comes home to be able to eat a meal probally just small amounts at a time.I stayed 7 days 3 in ICU and the other 4 in regular room.But i remember when i got my frist stents in 07 i just wanted to walk walk walk it felt so good to walk without pain .but as my friends have told you this disease is controllable but it requires maintence and monitoring with her Dr.and all of it is worth your toes ,legs and kidneys. It becomes part of your life and she will be able to tell when it's blocking off again and we will all pray that she'll be one of those that never has any more problems and since her legs are not blocked thats wonderful news maybe they can stent her kidney and bypass the bad section of Aorta and it will last her for many years. I wish you and your mom the best .Tell her she is in my prayers and not to be scared Dr's have alot more technolgy these days it's amazing the things they can do.I'm in South Carolina and you have found the perfect place to get feed back it's a great group of people here just ask and somebody will have a responce usually to most questions

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Hello everyone. Today is my moms surgery. She is scheduled to start surgery any minute.
Thank you to everyone for all your support. You have helped me so much. I will be in touch today and let
You know updates. God Bless!

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She is still in surgery. Nurse came out to tell us they were working on the kidney. Could be another couple of hours.

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Surgery took 5 hours. Surgeon was able to replace the damaged aorta. They did a double bypass to the kidneys as well. So far so good. She is in recovery.

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I'm glad to hear surgery went well. That's a real big one. Are you OK? Seeing Mom in ICU after a surgery this size can be difficult. Oh, and in a few days, they have this cool cap that washes and dries your hair - like a shower cap and beauty hair washing station combined. It feels sooo good and it's something you can do for Mom right away.

Thinking of you both


sharon

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Seeing her is really hard. Doctor seems happy with her progress
But her kidneys are in shock.
Her pain is pretty bad. I thought she was asleep and then she let out a huge gasp and said she was in a lot of pain. Even after hitting her pain doctor. I am kind of scared right now

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Why don't you think about getting some answers. I don't remember any pain - absolutely none and I'm not the bravest soul on this earth. Maybe they need to withhold some morphine because her blood pressure isn't stabilized or maybe there's something about her kidneys but - it seems there's something they can do - extra epidural or something to better control her pain. I know it's hard, but you are her biggest advocate right now and sometimes you gotta demand what Mom needs or a thorough explanation of why she's not getting it. One time, my mom had open heart surgery and was only given tylenol for pain. I flipped out. The explanation was she reacted too strongly to morphine. well, duh - i'd already warned them about that. I ended up firing her surgeon on the spot and giving her care over to her cardiologist who gave her enough pain relief so she could sleep, eat and move thereby avoiding pneumonia.

I know it's hard - I was where you were for a lot of years. Hang in there and you might want to borrow my mantra: "i'll cry when she's better, I'll cry when she's better" - and cry I did, long and hard - when she was better. Know the best part of that? She could hold me then. It made waiting worth it.

You'll be ok. I believe in you.

Sharon

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Thank you , that is a wonderful way to look at it. I am pretty strong in her room and then cry a lot when I leave. Her kidneys aren't functioning well at all. They say they are asleep. They were going to do dialysis today. But she is starting to make urine so they are holding off until tomorrow. Her pain is worse today. But day 2 is usually the worst. They did up her meds. So she is doing ok. They can't give her too much meds because of the kidneys and blood pressure.

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Good for you to get your answers - even if they weren't what you hoped for. Mom's kidneys seems to be waking up and that is a whole lot of good stuff. I don't know much about kidneys, but I know they wanted to be extra careful not to involve mine any more than necessary - I guess it's a tough one. Which you are finding out.

Mom is lucky she has you. And i'm sure you feel the same about her. There's a thousand platitudes out there which I always found a struggle to be kind in responding to. No platitudes here. You're doing a good job and taking good care of Mom. She knows that on some level.

Hang in there. You can do this.

Sharon

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Thanks Sharon !

You all have been so wonderful. I would have had an even harder time if it wasn't for all of you. My Mom is still in the hospital. today is a week since surgery. Her Kidneys are improving slowly...but improving a little bit everyday. She has had to have dialysis three times now. The kidney doc still feels it will be temporary. Those kidneys just aren't in a good mood after all of this. LOL .....they will come around. She is now off the pain line so now just on oral meds. So pain is a little worse yesterday and today. But it is tolorable. They want her to start eating and she isn't real into it. Is this normal ? Her tummy is growling , but she says everything smells bad and tastes bad and she doesn't want to eat. She needs too ...grrrrrr. They are starting to make her walk a little each day and it just wipes her out. I know several of you said you were the same. They are hoping her kidneys will be well enough at the end of the week. They are going to send her to a rehab place for a week before she goes home. Which I am happy about. I think if she went home she would just lay around. And this way they will make her get up and move around. I can't wait for her to start feeling better. It is so hard to see her like this , but I know God is in control and in time she will get better. She has come leaps and bounds in a week.

How are you feeling Sharon ? I hate to hear that you are having problems again. I will continue to pray for you as well.

Thanks all & God bless
Traci ~

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Mom is still in the hospital. Been 14 days now.

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Oh, Traci. I'm sorry I missed your last post (or the one before last - you know, about mom's kidneys). 14 days is a long time, but I was in 8 days and I didn't have the complications Mom did with her kidneys.

Yeah, eating is an issue. When I came home from the second surgery, I just had the hardnest time eating. I'd take a few bites and feel like I had eaten a 7 course meal. What did I do? Of course I came here and asked. I guess this is not unusual at all (I don't remember that happening after the 1st surgery, but it wasn't as long or as complicated). Someone said that our stomachs are not happy campers because they've been thrown around (or something like that). Makes sense to me. I guess it took about another week after I got home to really be interested in food - about the time I could begin to do more than slowly walk a few feet at a time. Just as a suggestion, you might want to ask the doctor about the taste and smell difference your mom is noticing. It's probably nothing, but maybe it's a side effect of some meds that could be changed to help her eat. It's kind of a Catch-22; you absolutely have to eat to have the energy to move and walk but food just is of no interest - partially because you aren't moving and walking around. The other part of my problem was that I felt a little nauseous. No one really believed me until I started vomiting. I had told them I was reacting badly to all the tylenol they were giving and, of course, I was poo-poo'd. Humm. I get sick and then they listen, though.

Going to a rehab after discharge I agree is a wonderful idea. I asked about that myself but I was moving around much too well to qualify. You are tired, hurting and just lack all kinds of energy and you do need to force yourself to move at first. And it is so important that you do - it keeps pneumonia away, it helps the healing and just generally makes you feel better about the whole world's situation. Come hell or high water, I was going to do everything I could to make the surgeries work so, my day would go something like this for the first week - wake up at 7'ish, coffee, little breakfast and lots of pills; shower by 8-9; little walk around the apartment complex (about 10 minutes with several stops), home by 9:30; do email and such; first nap about 10; up around 12; lunch; little walk; do dishes; nap at 2; up at 5; make dinner & eat; pills; little walk to get mail; watch tv; in bed for the night at 9. You notice that there are at least 2 naps of 2-3 hours each - sometimes longer. It takes a long time for our bodies to heal - we need to be patient with ourselves and everyone around must be patient, also. The bottom line is Mom must move - even a little - but up, dressed, walks, stuff - a goal a day was my motivation. I was driving about 2 weeks after I got home and just kept getting better and better. It took about 3 months after the first surgery and close to 5 months after the second to really feel like normal again. But I was back at work after 2 months when I had the first surgery and 3 months from the second. Mom can do this - I know she can. But a little help in the form of rehab will set the pace for her. Great idea!

And there's the constipation from the pain pills - yeah. well, exercise helps that, too. That and just the over-the-counter stool softeners and natural laxative (the pharmasist can help with that). You might want to pick it up next time you go to the drug store for something (not a bad thing to have on hand for all of us). I don't know about where you are, but Stanford (second surgery) just seemed obsessed with me nether region. I tried so hard to explain that you need something going in in order to have something to go out - you know? I had to wonder about all those nurses' potty training.

I know it's hard for you, too. How do you choose the best course between encouraging and nagging; between being Mom's friend and being her daughter; and between being Mom's advocate without making her feel bad. This isn't easy for either of you. I found it was important to just be a daughter once a day or so - calling her Mommy, laying with my head on her leg, asking her advice about something, holding her hand while she takes her walks. That nuturing was something I needed and she needed to feel needed and able to still nurture. It's something to think about.

Ok, book's done. Fill us in on what happened this last week - what more the doctors' saying - any discharge dates, etc., etc. Just as a suggestion - you might want to make a new journal entry - like Part II. These get old and lost in the new ones and then we may miss you.

Take care, Traci. Say hi to Mom. And, again, I'm sorry I missed that post.

Sharon

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Traci, do you see what i mean Sharon you are the best at making people feel better with just your story. Up walking OUTSIDE 1st. week home HooRay for you .it took me a while longer,i was maybe getting in the shower alone with hubby still drying me off week 1 but i was to weak for all that walking. I couldn't eat but a few bites at a time for awhile either.I think after they fish flop your insides and don't feed you for a week your stomach has been asleep,shrunk,and moved around to much for alot of food to start off.I lost 30 pounds after my bypass But i have found it along with somemore i didn't want LOL. Everybodys reaction to this surgery .Last week i watched this procedure on you tube .My hubby saw it and asked why? but i thought i've had this done so i want to see it.Just what did my body go thru ,interesting but i see why we're so sore afterwards.Traci i'll be praying for you & mom to have a speedy recovery and no more problems with her kidneys.I hope all things will be good and corrected from her surgery.

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