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jworth
10-21-2013, 10:35 AM
Hi everyone,

I've been inactive for a little while, just doing a lot of reading and research for my upcoming surgery (T3-L3). My date is set and I've decided to stick with my doctor, after getting several other opinions. I am a nervous wreck but really trying to stay positive and think good thoughts! I had my pre-op appt the other day and it was quite a reality check. I've never been hospitalized before, other than when being in labor with my 2 children. My doc is very optimistic and I'm hoping with my curve and relativity young age (42), my surgery will go smoothly. I'm wondering if anyone could suggest anything to do in advance at home to make life a little easier for both me and my family. I work FT and would like to prep as much as possibly to help out my husband and kids.

Another question is in regards to a blood transfusion. Has anyone needed one with their surgery and did they donate their own blood?

Thank you in advance for your feedback!

susancook
10-21-2013, 02:06 PM
Welcome! I decided not to donate (as we live 12 hours from the hospital and I did not want to go down just to donate, so arrived 7 days before surgery) but my son and husband did. I needed more blood than that. My surgeon will of course allow donations, but does not encourage it.

I read lots of older threads and found tons of getting ready discussions. This was also my first big surgery of my life. I somehow found confidence in my surgeon and relaxed 2 weeks before the surgery. I wanted peace before that, but it finally came to me.

I am almost 7 months out and am pleased with the results. I have very little to no discomfort now. I continue to improve.

Can you talk with people that are your age that have had your surgeon? Sometimes that is reassuring.

Where is your surgery? Who is your surgeon?

Best of luck. Susan

tae_tap
10-21-2013, 02:13 PM
I donated my own blood (three units) for my first fusion. I did have all three replaced after surgery. For this surgery on the 13th I am not donating my own blood. I know it weakened my immune system the first time and that was with taking prescription vitamins. When is your surgery and where is it?

Tamena

susancook
10-21-2013, 02:20 PM
Tamena made a good point that also worried me, that of weakening the immune system. I felt very strongly about donating before surgery, but the point of self-donating and decreasing my immunity won in the end and I chose not to donate the one unit. I needed far more than the usual person, I believe that I received 10 units of blood.

Susan

jworth
10-21-2013, 02:22 PM
I am going to discuss this with my doctor again. Thank you for your feedback. Honestly, the thought of a blood transfusion didn't even cross my mind until I had my pre-op appt last week. I am having surgery at Abington Hospital- Abington Spine Institute in PA in mid November.

Irina
10-21-2013, 02:31 PM
I had a surgery with the same doctor that Susan did. My doctor did not encourage blood donation because it would weaken me. She said that most likely I would need more blood than I would be able to donate and I would end up with somebody else blood anyway. She was right - I had a lot of transfusions because I lost quite a bit of blood during the surgery. Second opinion doctor had the same views on transfusions.

tae_tap
10-21-2013, 02:34 PM
Good luck! Looks like we shall be recovering at the same time frame. :-) Nothing but positive thoughts from here on out.

Tamena

jworth
10-21-2013, 02:44 PM
I feel much better about it. I called my doctors head nurse and she said he doesn't not recommend it either. I'll hope for the best that I wont need one. Thank you for all and best of luck.

tae_tap- just curious about your second surgery...was the first one not successful?

tae_tap
10-21-2013, 03:28 PM
[QUOTE=jworth;154176]I feel much better about it. I called my doctors head nurse and she said he doesn't not recommend it either. I'll hope for the best that I wont need one. Thank you for all and best of luck.

tae_tap- just curious about your second surgery...was the first one not successful?[/QUOTE

Well, the first surgery I tried to correct a double major curve by doing a procedure call Short Segment Bone on Bone where we removed the disks in between and compressed the bones together to heal like a broken bone. I fused T12-L2. In one years time above the fusion the curve progressed and below it started to collapse and the disk is thinning quickly. Here is a little example of how fast things are progressing, I went from being 5'1 1/2 to 4'9.9 in a matter of 8 months.

I am fusing both curves now from T3- Sacrum with pelvic fixation. Part of me wishes I had done it to begin with but I probably would have regretted not trying the smaller fusion.

Tamena

Irina
10-21-2013, 03:45 PM
Good luck to you, jworth and try to relax. I know, either said than done. Do not stress out about transfusions - it is very common and they check blood thoroughly before giving it to the patient. The word 'blood transfusion' might sound scary if you've never had it, but even if you need it, you would not care much about anything.

Right now, try to stay busy and think PAST surgery. Think about your new life that is almost here, what things you always wanted to do, but could not because of your back.

Make sure that the house is safe for you - remove any area rugs, make sure you have enough room to move around the house with a walker. We had to move some furniture pieces because I could not maneuver with my walker around it. I think I only used a walker for a few weeks, but it was helpful in the beginning. Move your clothes from the lower drawers to the upper ones because you won't be able to bend or squat in the beginning. Switch drawers with your husband if need be. Do you have a sponge on a long handle and a shower chair? A toilet seat raiser or a commode toilet? They might give you a commode in the hospital. Buy a few bras that close in the front - you would not care about any bras in the first month, but then a front closure ones would be nice. You don't want any hooks to irritate your scar. You would need several grabbers around the house. And buy all the perishables you can think of - toilet paper, napkins, detergents etc so that your family would not have to worry about that.

leahdragonfly
10-21-2013, 03:47 PM
Hi,

I wanted to chime in about blood transfusions--my surgeon would not allow me to donate ahead either (that was fine with me). He wanted me going in to surgery as strong as possible and without compromising my immune system. I was fused T8-sacrum/pelvis at age 42 and required I think a total of 6 units of blood...4 during and 2 more a couple days after surgery. Likely you will need banked blood, but I was reassured that it is very safe and carefully tested.

As far as what to do to get ready. I would recommend exercising every day if possible. Make sure you have thighs of steel, and a good strong core. Consider getting your legs waxed a week before surgery so you don't have to worry about shaving. It will be out of the question for a while (and you will not care). If you practice any other "ladyscaping" or trimming I would do it a few days before surgery because you will not be able to bend to view things for awhile. Sorry if this is TMI!

If you have school-age kids at home prep them for how you will be after you get home from the hospital. They need to be guided about what to expect so they aren't upset (Mommy will be sore and tired for weeks, and will need to lay in bed and rest a lot). About the only activity I could do with my kids in the first few weeks after surgery was lay down and read aloud, so if you have school-aged kids you want to stock up on some good read-aloud books.

You will not be able to do ANY housework for weeks, so your family needs to be prepared to pick up all the slack. You will not be able to shop or cook for awhile either. Many of us did not drive until at least week 8, some longer. Be prepared to let the housework go because you will be exhausted and sore, and must allow your body to heal. This is not the time for a perfect house.

You may want to stock up on movies (load your Netflix que!) or music to listen to so you have something to do during the day. I definitely suffered from toxic levels of TV exposure by the time I returned to work at 14 weeks. How long do you plan to take off?

Stock up on some of your favorite "sick" foods that are easy to digest even when you don't feel well. Many people do well with soups or smoothies. Think excellent nutrition, high protein, plus plenty of fruit/veggies for fiber.

Also, don't forget to have some laxatives and stool softeners on hand. You will need them for sure. There are lots of helpful threads about this (search "constipation"). You want to minimize this as much as possible, as it is extremely uncomfortable and almost unavoidable with all the narcotics you will take. I found Miralax, Senokot-S and Colace helpful. You also should have a bottle of MagCitrate available for severe constipation. It is the bomb. You can find all of these items at the drugstore over the counter.

When you are ready to be discharged make sure your family picks up your pain meds BEFORE you leave the hospital. We learned this the hard way after getting the runaround from our local pharmacy about the huge quantity of pain meds prescribed (Safeway was unable to fill it for some reason, not sure why). I almost ended up in the ER because of this. We live 2 hours from the hospital where I had my surgery, which made the situation worse. The day before you are discharged the doctor should give your husband your prescriptions so he can have them in hand when you leave the hospital. You will probably have to ask about this to make sure.

You may also end up with your period in the hospital, even if it's not time. You might prefer to bring some of your own sanitary products to the hospital, as they will be more comfortable than what the hospital offers you. The nurses will help keep you clean if this happens, and you will not care. Bring some lip balm and either sturdy slippers or easy slip-on shoes. You will be out of bed and up walking a day or two after surgery. Other than that you don't need to bring a lot to the hospital.

Best of luck and please let us know how things go! There are lots of us here who have been through this and you will get through, too.

susancook
10-21-2013, 04:20 PM
Hire someone to help clean your house occasionally if you can afford it. Like Gayle said, keep an arsenal of stuff for constipation. Most everyone has been there and it is not pretty. Get an enema and rubber gloves and other meds for constipation mentioned earlier. The gloves are for your husband to give you the enema if you need it. it will happen. Get your partner/husband someone on board to help out with everything. Kids are great with this. Church groups and neighbors can bring food.

Get lots of grabbers. Irina has a post about folding ones that are great.

Get a notebook and have the people with you keep notes. I do not remember very much about UCSF hospital. The pharmacist put together such a marvelous cocktail of drugs that I remember little. I was so out of it, that I never knew that I had a PCA button. As I said that I needed pain meds, my husband said for me to press my PCA button. I was clueless and while he was not supposed to press the button he did and I finally fell asleep. I must have been labeled a "difficult patient" for many reasons and I must have an abnormal reaction to drugs because I went from in pain (I do not remember it) to barely breathing and needing Narcan to counter the meds.

Be as prepared as you can, but I found that recovery took longer than I thought that it would. I, of course, was above the possibility of constipation.hahahahahahahaha.

Get as organized as you can, do your homework, take lots of deep breaths, pray and just go with it.

Susan

jworth
10-22-2013, 08:28 AM
Thank you everyone. This is really helpful. A few more questions..


- bringing kids to the hospital...OK on day 2 or 3, or not a good idea? I know my kids will want to stop by when I'm there
- has anyone needed to go to rehab after the hospital? My doc said its probably a 50/50 chance and to be conservative about it
- suggestion for a bed on the main level of our house so I wont have to climb the stairs...good idea?
- chances of going out for a nice dinner to celebrate my dads birthday about 4 weeks post-op
- when did everyone get out of the house for a few hours?

Sorry for all of the questions!

susancook
10-22-2013, 11:55 AM
Thank you everyone. This is really helpful. A few more questions..


- bringing kids to the hospital...OK on day 2 or 3, or not a good idea? I know my kids will want to stop by when I'm there
- has anyone needed to go to rehab after the hospital? My doc said its probably a 50/50 chance and to be conservative about it
- suggestion for a bed on the main level of our house so I wont have to climb the stairs...good idea?
- chances of going out for a nice dinner to celebrate my dads birthday about 4 weeks post-op
- when did everyone get out of the house for a few hours?

Sorry for all of the questions!

Kids: How old? Need to be prepared as you might have blood hanging; D3 at earliest. Time when you will be up in a chair; play be ear, so do not promise them as you may feel like you want them to visit on D3-4 but then again, you might be vomiting and receiving blood; short visit; have them make a card for you [they will feel good about that and you will cherish it forever]; adult to bring them and take them home; have someone get you ready with your best face on, stage the room and hide any grossness; HOWEVER: I do not remember D 1-5 in hospital and imagine that I would have been awful company; for the kids, that would be great, so I would have done it for younger kids if I had them [mine are adults]

Also, if you have kids under 10, you might want to give them a picture of you and an important article of yours to hold on to until you get home [that way they know that you are coming home and their fear of your dying will lessen; show them pictures of what your back incision line might look like [there are great pictures on You Tube and you might have them watch a You Tube of somebody else's surgery stay]

RehaB; I went to rehab for 7 days and really thought that it was great! I di remember rehab and kids are very welcome and can see you walking around; they basically throw you out of the reg hospital with little self-care competencies; yu will be better rested to come home to kids

Bed: Main level would be better, esp if you do not go to rehab as you gain strength for stair walking in rehab

Dinner at 4 weeks: Probably yes, great idea for everyone; get handicapped sticker; plan not to be gone for more than an hour

Out of the house: After rehab, I went out of the house almost everyday for short trips than progressively got longer; walk every day a few times for short times every day; brought a walking stick with me. Outside is great for mental health and feeling normal; you will not be driving until you get off heavy narcs, which for me was about 2.5 months. Varies a lot. If it is cold, have somebody drive you to a mall and walk. The first time that I had sunshine on my head in rehab I knew that I was truly alive and felt so invigorated! You will get tired, naps are a must!

Good luck! I think that you will do well; Susan

Irina
10-22-2013, 01:00 PM
In your and my age group people might go straight home IF they have an adult at home with them 24/7. I remember discharge instructions saying that I should not be left alone for more than an hour during the first week. My husband took a medical leave for a month and my parents live near by, so somebody was always with me for about a month. They would always be next to me when I took short walks to make sure I won't fall. You cannot fall! You might be groggy from the meds and shaky on your feet in the beginning. I could dress by myself (they teach you how to do that in the hospital with the use of different tools), but I needed help in the shower. I remember my first shower I was so exhausted and a chair in the shower came in very handy. You will need somebody to cook for you for at least a few weeks.

Can your husband or parents stay with for at least several weeks? If not, it's better to go to a rehab. Also, there are some people on the forum who did a solo recovery, I'd imagine that must have been hard.

jackieg412
10-22-2013, 04:47 PM
HI,
I did donate 2 units for both of my surgeries. On the BIG ONE!!! I needed that and 2 more. The surgical team also used a machine called a cell saver---it remained hooked in the surgical site for several days. It amounts to a machine that gathers what you bleed out, cleans it and gives it back to you. It must not be used all of the time as the ICU nurses were really impressed by it. As much as I can remember it was bulky. The lovely post surgical drugs made me think it was a monster!!!{ Very needed after surgerey--but boy oh boy what they do to sane behavior!}
I went to rehab after 5 days in the hospital but was able to walk the steps there right away. Steps seem to be Ok but you may need someone with you.

I would think children{even teens} will be scared. So many machines so many other sick people. I for one didn't even want to talk. It was hard on my children and they are all adults. So wating a few days is best.
I could only hold their hand or nod to them any way.

Stay healthy and get as strong as you can. You will need very strong legs that need to remain that way.
I walked and walked--I had a long time to prepare for surgery as my 1st surgery was done by workers comp and they fight everything.
Someday I need to say how that came about.

We are all here for you,
Jackie

susancook
10-22-2013, 10:26 PM
Jackie: I do not know what that big machine was that you had attached to you for a few days. Do you think hat it was some sort of drain? The surgeon used a cell saver on me, but it was a machine used only in the OR and recycled the blood that I suppose was suctioned off the surgical site and then was re-transfused into me in the OR after it was cleansed in some way.

The cell saver obviously saves the need for even more blood than I needed.

Susan

WLB1
10-23-2013, 07:02 PM
One thing you are not going to know about until after surgery. For me it came as quite a shock that I could not reach my rear end in order to take care of my cleaning needs, if you know what I mean. There are things that help if that is the case for you. First, try your non dominate hand to see if you can accomplish the task that way. It took me a while to realize a different approach with a different hand worked. If that doesn't work, there are appliances that help extend your reach. Amazon sells Bottom Buddie online, along with other aids. There Óre moist wipes that are really helpful in that way, since assurance of being clean is hard when you can't reach well. I don't know how you feel about it, but I am not planning on letting anyone else take care of that problem for me until after my last breath, if I can help it! Relax and don't worry if you can. I was in the hospital for a week which I don't remember very much about. I remember almost nothing until the end of the two days in ICU. I was at a rehab center for a week. Hated that. I am 63, and I was able to walk up stairs to my bedroom first thing on coming home. Keeping up going upstairs has helped me keep my energy and strength up while I havn't been as active as I want to be. Good luck!

golfnut
10-24-2013, 08:39 PM
My surgeon did not encourage me to donate my own blood and assured me that the blood bank was safe. He thought I would need 4 units, which was correct. I waited until I was fully recovered and have started donating my blood to the Red Cross to "pay it back." I was 60 at the time of my surgery but did not qualify for a rehab. center based on what I was able to do at the hospital following surgery. I was in the hospital 6 days and sent home, however, my husband was able to be off of work to help with cooking and my care. I did not have horrible back pain, but abdomen pain from constipation issues caused by the pain meds. I was able to be weaned off the meds at 5 weeks and started wanting to get out of the house on a daily basis. Being out of the house for lunch or dinner and seeing people was a big aide to recovering.

gardenia
10-25-2013, 10:09 AM
One thing you are not going to know about until after surgery. For me it came as quite a shock that I could not reach my rear end in order to take care of my cleaning needs, if you know what I mean. There are things that help if that is the case for you. First, try your non dominate hand to see if you can accomplish the task that way. It took me a while to realize a different approach with a different hand worked. If that doesn't work, there are appliances that help extend your reach. Amazon sells Bottom Buddie online, along with other aids. There Óre moist wipes that are really helpful in that way, since assurance of being clean is hard when you can't reach well. I don't know how you feel about it, but I am not planning on letting anyone else take care of that problem for me until after my last breath, if I can help it! Relax and don't worry if you can. I was in the hospital for a week which I don't remember very much about. I remember almost nothing until the end of the two days in ICU. I was at a rehab center for a week. Hated that. I am 63, and I was able to walk up stairs to my bedroom first thing on coming home. Keeping up going upstairs has helped me keep my energy and strength up while I havn't been as active as I want to be. Good luck!

Purchase a hose-bidet that easily (my husband) attaches to the water line that fills the toilet. It is the best invention ever. I too could not reach and too private to let anyone help. This bidet is absolutely the best!!!!! You shoot water (cold has no effect on both ends) and most is washed away leaving only some little patting with tp and voila you are done. It came handy when I suffered from my gastric problems with 3 wks living on the toilet.

jworth
10-29-2013, 12:01 PM
Thank you all for your feedback. Since I haven't had surgery and certainly nothing like this, your feedback is incredibly helpful. We're starting to do some things around the house to get ready and I'm trying to stay positive despite my fears. Im sure a lot of you can relate. I am lucky to have a great support team, both with family, friends and at work. I do hope to be able to start working PT from home in January and my boss has already set me up with being able to do that. I know this is just a temporary bump in the road and have told my husband and kids that their support and patience mean the world to me. I know this will be hard for them as well. Best of luck to anyone else in the forum that is having their surgery in the next few weeks. Keep in touch and good wishes sent your way!