Graft updates

"God Knows." A simple yet powerful reminder. A friend of mines niece got really sick and I followed the moms blog to get updates on the little girl. I was amazed at the moms transparency to everything that was going on and she kept saying "God knows." Which is so true. I don't know. Doctors don't always know. Friends & family don't know, but God knows, so that is what I'm clinging to - God Knows. And so I put my hope and faith in that, because nothing seems to make sense to me and I really don't understand why things are happening. 

Went to see Dr Sigalove today and my good friend Lori came with. Sure enough my complicated body seems to complicate things. I have no immune system, I have problems healing and we unfortunately are seeing how this can negatively effect me. Turns out that only 40% of my graft has taken, and there is even the possibility that the skin that is there could end up not staying and sticking as well too - we will know by the end of the week exactly how much will have permanently taken. I don't understand. I don't. Friday things were awesome and looked great... And now... Only 40% has taken and that might not even stay. Stupid body. BUT, God Knows. While in the office Dr Sigalove also, removed about seven staples and the skin that did not take, so the knee/graft site sort of got cleaned up a bit. Now the knee is being bandaged a different way again. The donor site is looking good, and we changed the way that is being bandaged as well too. I need to wear the giant brace/immobilizer for another 5 days. I am doing another week on heavy antibiotics as well too. I will continue to bandage graft site and donor site until July 11. Ill go back to see Dr Sigalove on the 11, and he take the mesh covering off my donor site and remove the other staples. Ugh....BUT... God knows.

post-op

This was posted on my CarePage

Since coming home on Tuesday, I quickly realized wow, I can't do anything on my own! I was thinking just my knee would be immobile - nope... It's my entire leg! From ankle to hip. So, I have been trying to figure out who can help me! I can just make it to the bathroom and back on my own and can make it up the stairs to get to bed. I am very thankful for all who have helped come over in the morning to help me get ready for the day and for coming over at night to help me get to bed. It's been very challenging. My mom oh so graciously paid for the girls to stay with the Vet until this morning, and they are all clean & tuckered out.

When I keep ice on my donor site and take my pain meds, the pain is manageable. My knee isn't too painful, just stingy from the staples. It can't really bend because of THE GIANT brace I'm in.

Yesterday (Friday) was a good day. I spent it with my friend Angie. We hung out all afternoon and evening. She took me to my first post-op appointment as well. Which was like going to a spa! It's the new location and where all the plastic surgery esthetics stuff is done, and all the lovely ladies who worked there all looked like they had work done. Anywho... The nurse took my giant surgical bandages off -ow! And looked at the graft site and said, "wow, that looks fantastic!" She then looked at the donor site and said, "this looks amazing as well" when do I ever hear things like that at the doctor?!?! uh never! SOOO yeah things were healing like they should. I was then shown and told how to care for both sites and bandage them up. The donor site is super sensitive and will hurt like it does for about another week. The graft site should remain ok, since it is immobile. Everyday I need to change the bandages. Well, after the appointment Angie agreed with me that my leg with both its sites has just become a larger pain in the ass then it was before because I can not do the bandage changes on my own... Meaning I need more help! Sheesh. So, yay yesterday good day.

I did NOT sleep well yet again, because well who can sleep flat on their back and not move at all or bend a leg - not many.  Very uncomfortable. This morning my cousin Ari and her two boys were coming over to help me get ready for the day and then Hang out and help me. On their way to my house, they got to pick up Darla & Olive from the vet for me! Yay, girls are home and snugly. Well, I got bombarded by hugs and kisses from two little boys and the doggies when they came into my bedroom! When, Ari unwrapped my donor site, things looked the same and good. She added the ointment, put the pad back and wrapped it back up with ace bandage. We then slid the immobilizer off my leg, and unwrapped the knee/graft site.... and my eyes couldn't believe what I saw and I looked at Ari with watery eyes... There are about three staples that are loose and a part of the graft has "peeled" away from the knee and it looks drastically different than yesterday. I know I was told to be patient and that healing was going to be real tricky I was just HOPING things would go well. Sure enough, I called Dr Sigalove and he told me how to rewrap the knee a little tighter and that I need to see him first thing Monday morning. He might do a procedure in his office to help the graft he might not be able too. He then explained to me again that some times grafts don't take all the way and how tricky of a spot my graft was...he then also told me how sorry he was that this has happened. So, I am frustrated. I don't understand why things like this keep happening. I am praying that things heal and that God continues to give me the strength to get through this all. But boy is it maddening. 

Until Monday... I will continue to sit and watch TV, movies and the hawks. I am asking and receiving the help I need. Icing my sites. Taking my meds. Monitoring my sugars. Doing everything I can. 

Thank you for ALL the help... Thank you for the encouraging words... Thank you for the prayers. Here's hoping things take another turn, only for the good.

Home!

Please not i am under the influence of narcotics as I write this.

Well I am home, got here around 8:00pm and Morgan is taking care of me and is sleeping over. 

They ended up calling me and asked if I wouldn't mind coming in early bc Dr Sigalove was ahead of schedule! When does that ever happen? So, Morgan and I headed over just shortly after 1:30. I got right into the lab, they checked us in right away and I was taken back. They were so on top of things and so efficient! I saw dr Sigalove and went over things with him and he initialed my knee. after that th nurse and Morgan & mom came back to be with me and were there when Dr Concrad, anesthesiologist came in.  My IV got put in on the first try! Once IV was in I was given meds, Dr Conrad gave me some Versaid, I got a little loopy, hugged Morgan and mom and was back in OR just before three. Surgery went "extremely well". Surgery was done around 3:45. I had some issues in post-op with nausea and getting pain under control... This pain is VERY different than pain I typical experience. It's like very sharp stinging and intense burning pain. My thigh hurts way worse than the knee right now. I was give IV pain meds, anti nausea and then packed down with ice bags. I spent the majority of recovery back in post op. around 615 I was taken out if post op, to th stage 2 recovery where I saw Morgan and mom again. We were there for not that long and then Morgan took me to culvers for a chocolate shake and we picked up prescriptions at Walgreens. My knee has 15-20 staples. I am in a big immobilizer ankle to thigh, and then huge surgical bandage from knee to hip! I am doing ok. Tired & drugged. It hurts a lot. And looks like ill need WAYmore help with things than I thought! I will see Dr Sigavlove on Friday to get surgical bandages off and shown how to bandage the donor site (ugh more bandaged changes) and they need to look at knee as well.

Thanks for prayers, keep them coming!

Mandy

Surgery

First off, yesterday it was a beautiful day out...and ya know what?! I was outside ALL day and for the first time in THREE years I did NOT get hives, did NOT get tachycardia and did NOT end up in ER... Praise The Lord!!! New Addison's meds are doing their job.

So... Here we go tomorrow (Tuesday) surgery on the knee to close up the wound! Anyone want to trade places with me? I keep telling myself this is going to go well, I am ok, this isn't MAJOR surgery, I've been through worse.... But I'm still am anxious, worried, and stressed mess!! Here's the run-down...

Midnight stop eating.
8:00am stop drinking.
10:00 dropping Darla & Olive off at vet for the night :)

My good friend Morgan is coming around lunch time and is my surgery buddy. mom will come out eventually.

2:00 get to CDH and do last minute labs they need.
2:30 surgery "check in"
4:00 scheduled surgery start time.

Surgery is about an hour, once I am put under. Here's what I know. They surgically clean my wound and "trim" any unviable tissues off the knee/wound. They are then "slicing" a patch of skin from my thigh. (Think of like a cheese slicer). They stretch and clean that skin. The NEW skin is then placed over my open wound like a patch and will be stitched on/over the wound. He is not sure if he is going to use a "wound vac" yet, but I could have a wound vac put on over the knee to help with healing. My knee will be wrapped & and I will be in a immobilizer. The "donor" site, my thigh, is sort of like a nasty road rash burn and heals on its own. It is scheduled as outpatient with the possibility of staying the night. I was told this an uncomfortable healing process and I will need to be patient - fun. Having this RIGHT over the knee also makes the healing tricky. Otherwise... Ill find everything else out tomorrow when I see Dr Sigalove.

Praying it all goes well... Praying I don't get any infections... Praying the skin graft "takes" to the new site... Doing a lot of praying....

Ill be sure to get an update out tomorrow evening to let everyone know how things go.

Thanks everyone.
Love
Mandy

latest carepage

Here is the latest CarePage update...

The adventure continues… 

On Monday I saw Dr. Sigalove, the plastic surgeon, my older sister went with me, and agrees he’s nice to look at J ha ha BUT he said the wound is doing what he had hope it would be doing slowly healing and making new tissue. Yay! So, surgery to close the wound was schedule for two weeks on Tuesday June 18. It is suppose to be outpatient and is being done at CDH. He is pretty much doing a skin graft on me. They will put me under. The wound will be “surgically cleaned” and then A patch of skin will be taken from my thigh, and then be put over my wound to “patch it up”. I will be in a immobilizer for 4-7days because its right over my knee so it cant bend. After the immobilizer it will take about a month for the rest of it to recover and heal. SO, for the next two weeks I need to continue to bandage my knee and do wound care –UGH. SO annoyed and sick of this.  I am having to switch the type of wound care that I am doing for the next two weeks, which is a pain. I was using this stuff called Prisma, which was like a form of collagen that helps produce tissue growth, healing and keeps the wound moist. The prisma dissolves and you don’t have to take anything off when you change the bandage. Well, I have to go back to “wet to dry” bandages. Which means I take wet gauze and pack it in the wound and then put dry gauze on top. This is a little more painful, because every time you change the bandage you have to peel off the gauze off the wound, which then “peels” a thin thin layer of tissue off – it hurts. Dr Sigalove wants this bandage type because it helps keep the wound more “raw” and keep infection away better. UGH. I am for some reason really worried and freaked out about this surgery… Dr Sigalove, my primary care, rheumatologist and endocrinologist have all gotten “worry phone calls” from me and all have reassured me, this is the right thing to do, it should go fine, and we are taking all the necessary precautions.  I will go to the wound care clinic on Friday the 7^th and 14^th to keep on eye things until surgery.

This coming Monday June 10, is the “oral surgery” to get rid of my wisdom tooth. As a precaution I am starting an antibiotic this weekend, and will have to take a stress dose of my medicine for my Addisons. Otherwise, im being told this is should go smoothly and without complications

On Thursday June 13 my next Actemra infusion is scheduled as well as seeing Dr Rhew, my rheumatologist.

I will continue to wear the air cast on my right ankle for the next two weeks as well. My right knee, Norma, and the ITBand issues are really bothering me and cuase a lot of discomfort, despite doing everything I am told to do, so I will head back to orthopedics to address that next week as well.

Thanks for all the encouraging notes, emails and texts… I love them. Im that person who keeps things like that and appreciate it, so thanks.  To answer the “how am I” question its sorta trick and a very loaded question… I am doing alright.  Things are hard and discouraging at time . They also are beyond overwhelming and wearing on me. Meltdowns are more frequent, as well as tears,  but im trying to keep my head above water as much as I can. Ive told some that this whole knee/wound thing is really throwing me for a loop and the diabetes diagnosis makes me a little crazy – not to mention the other diseases im trying to manage. But I am trying my best and trying even harder to be more open with people and reach out for more help, not as easy as one would think… I do NOT understand why God has thrown all this my way, but for some reason he has, so I will keep the hope and faith and continue to truck along on these not so fun adventures.

Love to all

Mandy

Graduated!

Today my right hand finally graduated from Occupational Therapy! Woo hoo things feel pretty good overall. It tires out and gets sore quickly but no more dislocating or triggering! Yay!

Recovery

I am now 8 days post surgery and recovery is going well! No infections, fingers are moving and pain is being managed. I'm having some issues with nerve pain in pointer and swelling but nothing too bad. OT is challenging but doing a good job!

Surgery

Thursday was surgery and glad things went well. There was more scar tissue and inflammation then expected but otherwise no surprises. I am doing ok - Lot more pain than I expected and can't do as much as expected but making the best of it.

Surgery and break

Tomorrow I am having surgery on my right hand/fingers. It is a outpatient surgery to help with my awful trigger fingers. So, blog posts may be less frequent since ill only have one hand for a bit!

knees

Lately my knees are giving me TONS of trouble and it is so frustrating. Norma (my right, replaced knee) has given me NO problem until this latest RA flare. Ever since this latest hospital stay my knees are AWFUL. I can barely walk. They swell. Get Stiff. Lock. What makes me nervous is that Norma has never bothered me until lately and I can tell by how it feels that something is not right. My Left knee we got no where in terms of helping the MCL tear due to all the damage RA has done to the knee. I have been going to physical and we have been trying to strengthen around the knees and they help with pain as well. I am seeing my orthopedic surgeon on Monday to talk about knees and what needs to be done. It is so frustrating. 

Adventures...

If its one thing that has been estabslished over the past 24hours is that the "radiant" adventures of random Amanda are definitely continuing and really don't seem like they will slow down or end any time
Soon. I'm starting to think "radiant adventures" need to be "ridiculous adventures" cause it is!! RA/Still's Disease is a crazy adventure! Then you throw on Addison's Disease... Sjogrens Sydrome... Crazy allergies to medicines & temperature!! NUTSO!!! Oh and currently we still have shingles pain... Too many crazy little adventures lately.
On Thursday I had my rheumatology appointments - which was full of good news, bad news and news. Yesterday I saw my endocrinologist for my Addison's. My levels were off, so we are switching meds & monitoring labs. Went over all my symptoms and our little check list of things. I had the good nurse in the lab! Love her cAuse she gets my blood the first time- evey time! Today I went to orthopedics and saw Dr H, the hand specialist. It was a good appointment and we booked surgery for June 21. I had X-rays done today of hand & neck. We did neck bc Dr H says with RA and surgery he always likes to check the top
Of the spine/neck bc bones can
Shift. Anywho... Very nice technician. However neck X-rays take FOR-EVER! Sooo many pictures! I thought it was funny bc for three of them I had to have my mouth open bc otherwise your teeth get in way of picture! Ha. Lots of things happened past few days. Well, this week adventures still include another round of blood work and then infusion and gearing up for work. Maybe... Just maybe... Things will slow down or get easier... Maybe...

Tuesday... What a day!

Yesterday my sister in law was my clinic buddy... What I thought would be just blood work and hands specialist. However, when I woke up I made a same day appointment with my PCP bc my thrush and back hurt.

Sooo 9:15 I was picked up at away to
Clinic we went... It was nice
To have Jen come along, we haven't spent too much time together in awhile, granted this was for appointments it was ok. The lab was very busy, but they kept things moving and one of my favorite techs was there! So no problems there. After lab, headed to see Dr. H, the othro hand specialist I see.

Jen and I now had the iPad out looking and magazines, I ate my breakfast (had to fast) and waited. Right away my injections for my thumbs were set up - don't think I'll ever get use to see those big cortisone shots! Wowsa. Dr h came in, and I had my list of questions and concerns to go over with him. Jen helped make sure we had a clear understanding and help me stand firm on some things. I really like this doctor, but constantly struggle because I don't fit "the mold" of typical patients he sees with the problems I have - which causes me to stand firm in what I want done. We talked about the two surgeries I am considering and will have one done most likely middle of June. I was given injections in my thumbs and will go back in six weeks .

After that appoinnet Jen and I realized we had some time to kill so we went to a local restaurant named Honey and had like a brunch, Sooo yummy.

Then I went to see my PCP. Which is always fine seeing her. Turns out my thrush is still around, this morning I took another pill for it. Ive been saying my incisions and toes felt funny, turns out they are really infected and aren't healing the greatest. Talked about how to clean them and am starting an antibiotic for them. THEN we talked about this super awful, sensitive back/side pain I'm having. She really examined and looked me over. I had X-rays of back & ribs done, and a urine analysis. Liver, kidneys are ok, no broken bones... She is in agreement with what the after hours doctor thinks- I'm getting shingles. NOT COOL. So then we talked about shingles and the rash I'm to look out for.

It was quite a long day at the clinic!!

However... My day needed up with me going to counseling and then heading to a friends house for dinner with her and kids-- so fantastic!

No pain!

I realized last night and been reminded all day... I don't have RA pain in my toes!!!!! It's just stitches and surgical pain! TOTALLY AWESOME!!!

1 week post op

Today Sandra took me to my one week post-op visit with Dr A. In true Mandy fashion... While taking off my surgical bandages I got super queasy, threw up a little in my mouth and had to may down becuse I got so dizzy. I do NOT know what my problem is but I just can not handle stitches, cuts, wounds ect... Nope. Anywho... Everything looks good, even though I teared up and freaked out bc I thought my feet looked retarded and weird. Ha! I was told no more overlapping or curling toes!! Woo hoo I got rid of the crutches and can now also drive. However, stitches are staying in for another week as well as the lovely orthopedic shoes. So, happy healing to me!!

Feet!

This week has been devoted to my feet! I decided last friday with Dr A. the foot orthopedic that I see that it was time for our first foot surgery. We did on Wednesday. The beginning of the week I spent time in and out of the clinic and hospital doing all my presurgery things--EKG, chest xray, blood work, visit with primary ect. Everything went well. As you can see from my previous post, that surgery went well!! It has been SOOO encouraging and such an answer prayer to have this happen. This proves that my infusions are working and that my body is getting stronger and stronger in the this nasty battle of mine. Since surgery was sorta of "different" we all were not really sure what recovery would be like. Needless to say it has been going well just a little unique becuase it is both feet. My mom has had Darla and my sister my Megan has Olive which is great!! Darla would be very upset by my wrapped up feet and try to kiss/lick and would attack my lovely orhtopedic shoes and crutches. Olive would be curious at first then probably leave me alone. Every day since wednesday I am walking better and better. When I use the crutches I can get wherever I need to, it just I HAVE To wear my wrist braces. My thumbs dislocate and wrists "shift" when I use them becuase of the amount of support I use on them - boo RA!! If im around the house now, I can waddle like C3PO to get around the kitchen and in the bathroom. Its VERY funny. You should try to walk without moving toes 2,3,4 - its tricky! Each toe is wrapped up and separated which makes my walk so cool. But hey who doesn't like star wars, right? I have not been doing much but keeping my feet elevated and icing the toes. I see the doctor on Thursday for my postop. So... YEA for a succesful surgery!!! and here is hoping recovery keeps going well.

Foot surgery

So today I had surgery on my feet. I had a "bilateral flexeril tendon release on toes 2,3,4". It's soooooo nice to say things went as planned and there were no complications! This was done to help with my "curly toes", help stop permanent damage and with pain.

I'll write more later I'm just soo happy things went well!

All signed and ready to go!

After surgery...

Totally was happy and doing well in recovery!

At home showing off my cool orthopedic shoes!

Keep the toes/feet elevated and ices!

Thank you SOOO Much cousin Moe for taking me to surgery and spending the day at CDH with me and thank you Erin for helping me take me home from CDH and spenind the evening with me!