jbird1972

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I wanted to give you all an update on our last trip to Cleveland Clinic. I had a few more unpleasant tests/procedures to complete before they could review it all and present me to the transplant team at the clinic. If you have never been down this road before (first trip & hopefully last for me), I wanted to share the process so I can educate others and offer support. This type of transplant... Stomach, intestine, and Pancreas...is one of the rarest. My surgeon at the clinic, Dr. Kareem Abu-Elmagd, has pioneered this transplant. He started in the Pittsburg area, got the program established there and then decided to take his skill, knowledge, and team to the Cleveland clinic to make this option available to a wider group of people, and I am so thankful for this team. This is my only shot at a better quality of life and extend my life. I had completed a majority of my pre-ops when I was there in April for a month as an outpt.  I still had a handful of not so pleasant things to do, but we decided to wait until I could come back in July and bring my hubby and our 2 kids with. There were a few things that my hubby had to be there for that were related to transplant education, social work, and most importantly to meet Dr. Kareem, and it was very important for Dr. Kareem to meet the whole family, especially our kids. It's still all very scary, but the kids and Marty felt better after they spoke with Dr. Kareem. The doctor asked each one of them how they felt, did they have questions, and most importantly if they felt that I should go ahead with a transplant...they didn't hesitate, we had done our homework and checked his stats, they all said yes, that we should do this surgery. They are aware of the risks of this surgery, but they want their mom back and they know that an 18 hour surgery of this type is scary, and the fact that I'll be in ICU on a breathing tube for a couple days and it will be scary to see but when you weigh the risk vs benefit, benefit wins. While I was there I met with the transplant coordinator for our transplant education, met with social worker to go over his info, they drew 41 tubes of blood and took a urine sample ( I'll post a pic of the tubes before & after, the RN who accessed my port suggested the pictures. He said that he's been working in the cancer center for. 10 years, and that even though they just recently started taking over the port draws for transplant that 41 tubes still broke a record for him. He's a sweetheart, one of the many great nurses at the clinic), they had to move my power port from the right of my chest to the left because the skin over the right side of my port became necrotic, the hole would not close anymore because I lost too much weight.  I also had open back surgery to remove the spinal cord stimulator. (This was my 3rd one that we tried for abdominal pain, but it wasn't helping and it was actually a hindrance for me to be listed for transplant). This was my 6th back surgery related to the stimulators and the most painful one, I had a lot of scar tissue so just like the last back surgery they had to remove another piece of vertebrae in order to be able to clean through the scar tissue to extract the equipment. I spent about 4 days in the hospital. I also had an MRI of my head once the metal was removed because my head CT showed a Chiari malformation, the MRI made the doctor worry less about it, he said it's nothing to worry about and won't stop my transplant. I had 2 colonoscopies and an upper endoscopy, the first colonoscopy had to be aborted because even though I did my part of the prep, the gastroparesis from my original surgeon damaging/cutting my vagus nerve (Dr. Amir Heydari out of Centegra) has wrecked my small/large intestines so badly that my intestines were not cleaned out enough. The sedation didn't work so well either , so I was pretty much awake and aware and started sobbing because I had just reached my breaking point, they went ahead with the upper endoscopy and I was fighting the tube and gagging so badly that they were able to finish, but I felt like I was swallowing glass for the next few days. So , they still needed a colonoscopy, so I'll spare you guys any extreme details but I wasn't going to have to do it again, so made my own concoction that I knew would not leave anything to chance. Due to the timing of all these different tests and most of them required a fasting or a prep, I went an entire week without eating. I finished all the testing, including meeting with a psychiatrist (anyone in line for a transplant has to be cleared with a psychiatrist), and I passed with flying colors, I'm still not crazy, even though my original surgeon wrote that in my chart without my knowledge. He couldn't figure out what was wrong with me, so he wrote in my chart that it was all in my head. I knew I wasn't crazy, but that comment in your chart follows you forever. The clinic's transplant team meets each Thursday to present potential transplants.  The decisions have to be unanimous. I didn't think they would present me that quickly, especially since all my test results were not back yet. Everyone on the team said yes to transplant, only the GI said no for the moment because he has never taken care of me before and did not have time to review all of the records of my failed j-tube feedings, which were an epic fail. I still have nightmares of those months of them trying different formulas, different rates...all with very painful results. The tube feeds were making all of my symptoms worse, the pain, bloating, and nausea. The last ditch effort was this pre-digested formula that smelled so bad and was being kicked back out by my intestines, through the tube itself and then around the tube. I also had bile leaking out which is pretty much straight acid burning my skin around the j-tube site. I finally convinced my surgeon at the time, Dr. Kroh, that the tube feeds were not working he decided that wexwouldcjust try the tube for medications, some were already liquid and I would put them in and flush with water and then watch them slowly ooze back out, they just didn't want to absorb. I ended up with extremely red, burned skin at the j-tube site from the bile and then an infection, so after over 6 months of this Dr. Kroh finally agreed that we tried everything possible with the tube and he had one of his residents remove the j-tube, there's a saline filled balloon that hold the tube in and the resident forgot to deflate it and basically ripped the j-tube out. As you can imagine when my transplant coordinator asked me if I was willing to attempt j-tube feedings again I freaked out. I'm a really good sport, but I told Natashia that there was no way I could do that again. So now we are waiting for the GI doctor on their team to review that part of my chart so he can feel ready to say yes, it makes me very nervous. The same GI doc also took me off my TPN (IV nutrition) to see if I can eat enough on my own to sustain my nutrients/calories, I've already lost about 8 pounds and my labs are out of wack, hopefully whatever point they are trying to make they get to quickly before my body really starts to fall apart. My nutrition has been so compromised over the years that I can sustain for awhile at bad levels and then everything just shuts down. I've already had some scary low blood sugar episodes, and I'm tired all the time. I just had an iron infusion and a B12 shot, I'm doing those weekly and my hemoglobin still can't get higher than 9.25, I normally have a hemoglobin around 8, normal is between 12-15. So, we are in a holding pattern on the medical front. I've been feeling really sick the last couple days, terrible intestinal cramping, and nausea, and I'm really frustrated that I can't do even the small things I used to because of the back surgery. Wow, this was really an Eyore themed update, it's not like me and I don't like it. 

Just checking in. I had a battery of appts and a test today. I met with the transplant social worker, I'm not nuts...check! Lol He was actually really nice, tuned me into some resources for transplant patients, an especially good deal on a hotel that is only for transplant patients (which from this day forward I am). It's a Town Place by Marriott, it's set up like a studio with a bed, fold out couch, and a full kitchen/fridge, laundry facility in building, and free breakfast, free shuttle to clinic. Oh, and they also supply all pots, pans, cooking equipment...you all know how important that is for me, top chef lol. I'll probably make a drum set out of them and rock out lol Seriously, it will feel a bit more like home, and save a ton of $ on eating out. Also, the rate per night is (don't adjust your monitors)...$40/night!! The rest of the rate is subsidized by the clinic. I told him that some of my friends are getting together to do some fundraising for us (which we really need and truly appreciate), and he said that he has some additional resources that we might be able to tap into. I met with the insurance specialist for transplant, and so far we are good to go with insurance approval (yay!). I also did an online thing called Healthquest, they are these online questions that you do, this one in particular was regarding anesthesia. It gives them an idea if you have a risk for anesthesia problems, and due to my first surgery and the whole Fentanyl problem of "hey, I'm awake and I can't breathe, talk, or swallow over here" I'm always a risk. I also had an echocardiogram, just an ultrasound of the heart, and no surprise when she was trying to visualize the aorta and the bottom if the heart it was a black hole, too much scar tissue. I do have to change hotels to the Wyndham, but not until Thursday, and I spoke with the Cleveland clinic liaison at the hotel and even though they are sold out of the $99/night clinic rooms, he is honoring that rate no matter which room they give me, even if it's the Mack daddy room. He was super nice & helpful. Thursday is a better day to move because it's the only day I don't have any appts...yet! They keep adding more appts to my schedule everyday. I already had a CT scheduled for tomorrow, and 3 different GI appts., and now they added a mammogram before my CT. On Friday I have the yucky upper GI with small bowel follow through, and Thursday I have to do the lovely bowel prep for it (whimper whimper) ugh, oh well. I have my follow up with Dr. Kareem Abu-Elmagd on the 24th to wrap it all up and let me know the plan and then I can come home. It will be so good to come home, I miss Mart & the kids so much, and of course those obnoxious 4 legged dorks as well. I wish Gramps were here, I know and respect some of you may not get it, but after family & friends those little guys bring me peace and comfort. I have come to know many of the employees here at The Comfort Inn, and there's one shuttle bus driver, John, he's about 80, and he always includes all of his clinic patients in prayer at church each Sunday, including me. He knows about this transplant road I'm on, and he and I were the only ones in the van on the way back and as we pulled up to the hotel he started crying, really caught me off guard, and I asked him what's wrong? He said, "I was talking to my wife about you and I just feel so bad for you going through this". I assured him that in the scheme of things that this is good news, really, a new lease on life. He's fine now, it just really caught me off guard.  I think that's about it, it's so much! Oh, I talked to the kids, and they are doing ok.  I hope I sleep better tonight, long day tomorrow. 

Please follow the link and make sure to watch the video. It is my transplant surgeon in video:  
http://health.clevelandclinic.org/2013/11/after-rare-transplant-a-man-can-eat-again-video/

Ok, I'll try not to make it too long or confusing of an email, it's been a long day. So, I actually met both transplant surgeons, met the one guy I didn't know and he started going through the world's longest history (shaking his head during certain portions, of course we know which parts those were), he talked, asked questions, and did a physical exam. He was still talking when Dr. Kareem came in the room, so Dr. Kareem didn't want to interrupt his partner so (in a NON creepy way) he held my one hand and put his other hand on my head (like a blessing), and gave me a hug. It really gave me a warm, caring feeling. They both were horrified at what I had been through. So, there are some tests I definitely need to have re-done/done, and I'm going to get those done while I'm here to minimize the ping pong from home to here. They explained that depending on my anatomy now, they might start with a reconstruction of what I have, and some people never need the transplant after that, but even in people who still need the transplant that first stage operation can vastly improve quality of life while waiting for organs to become available. Sadly, as much as I appreciate all of your offers for bits of intestine, my donor items will have to come from someone who had passed on. I am a huge believer in organ donation, I've always been an organ donor (even pay extra for the Walter Payton Life Goes On IL Organ Donor license plate), but it did make me a bit sad that someone will have given their life in order to make my life better and healthier. 
Again, based on pre-op testing and looking at my anatomy on films, they will have a definite plan, but if I need the transplant either in addition to or instead of the reconstruction, they were both estimating that I would end up getting a stomach, intestines, and possibly a pancreas (I said spleen in my earlier email, I can only blame that on low blood sugar lol). They said most of their transplants end up being multi-organ transplants. Dr. Kareem is THE foremost expert in these types of transplants, and an innovator in the field (I did some objective research). Of course there are always risks (I have an entire book to read), but they both are very confident, no hesitation, that this will make me well again...I told them that halfway normal would be a win.  In addition to the anti-rejection meds that I would be on for life, I will have to live in Cleveland for the first 3-4 months after the surgery, and once that hurdle is cleared, they said I will always have an umbilical cord attachment to the clinic for lifetime check ups.  I am staying over a few days longer, need some extra labs drawn tomorrow, especially vitamin A (could be why I wear glasses now and can't see for shit while night driving on highway), if vitamin A is low that could be corrected. I also need to meet up with nutrition, and basically every other department here that can help get my body in the optimal shape for a transplant. I extended my hotel room to Tuesday, we can adjust as we go along, and this is a prime reason why I always buy trip insurance. I'll have to call United tomorrow and home health, Coram will have to get more TPN to me.  I'm sure there's stuff I forgot, more questions I will have, but I have no less than 6 business cards that were included in the giant book. 

I'm going to copy/paste the updates I sent to my family in order to bring you up to speed:

 

Well, the weather sucks, cold & drippy. I woke up late, but still managed to get to my 9am appt on time, wanted to make sure I got every bit of the hour and a half that the doctor was running late, ba duh bump...my bad joke of the day.  So, I haven't seen Dr. Kroh in over a year, I filled him in on the roller coaster ride, including the trip to mayo clinic and the report of all the adhesions/scar tissue that are causing at least some of these obstructions. I filled him in on the TPN, and that I can only do every other night due to the stress on my liver. I told him that I had signed up for palliative care, but that they have been unable to really help me stay out of the hospital, even though we begged for them to do what they do in the hospital for me at home that they do in the hospital, I have a port, and my doctor's blessing, but he even called him after this last flare up/obstruction and they told him that since I don't have end stage cancer that they can't really help me (trust me, I am so very thankful I'm not), but I fall through the cracks. We even inquired about the newly passed medical marijuana law in IL, even though I have mixed feelings about this (what message am I sending my kids?), but again, I don't meet the criteria, not even for the pill form. When I explained that to Dr. Kroh, he said it was ridiculous, and I agreed and just reiterated that I'm not dying so they can't help me, he then said (respectfully and with compassion) "well, you're not dying this minute, but you are looking really thin since the last time I saw you, and you look tired/run down, TPN is short term not long term and your liver is already taking a hit, and your nerves that control your digestion are shot and can't be repaired, so you are at end stage bowel (intestinal) failure." He agreed that the scar tissue is part of the problem, but he said the surgery would be complicated and dangerous due to all the previous surgeries that were done before I started coming to cleveland. He is working on making me an appointment with the Intestinal Therapy docs here at the clinic before I leave to discuss a total intestinal transplant. In his opinion, it's my last hope. He said that if I have another obstruction in the meantime, then I should call him and he would have me transferred from the hospital in IL to him here at the clinic, so he could do emergency surgery for the obstruction.  I don't know much info about this transplant stuff, it seems rare, I'll know more after the appt.  I'm officially scared, and I spoke with Marty about it and he calmed me down. 

       

I have been pretty busy in and out of the hospital, in cleveland and at home :(
I was admitted to cleveland clinic on August 7th and discharged on August 25th.  I went to my appt with Dr. Kroh and then they sent me to see the nutritionist the next day and as soon as she saw me, and how much weight I had lost she said I needed to start J-tube feedings and it had to be in the hospital because it is dangerous to start j-tube feedings if your nutrition is compromised that badly, and she said it would only be a couple of days to get me stabilized, so my daughter and I had a hotel room, but there was no way I was sending a 16 year old to stay in a hotel room by herself and my hubby couldn't come up for a couple of days due to work, so they let her stay with me in my hospital room.  I had to go through the ER to be admitted, but I had the most fabulous nurse named Becky, I will never forget her, she was the best.  The nightmare started after that.  I can only guess that the tube feedings went so badly because my small intestine is not absorbing, but in a week they tried about 5 different formulas with disastrous results...uncontrollable vomiting, pain, and diarrhea...after that week I begged them to stop doing anymore tube feedings and try TPN, so on August 20th they placed a Hickman catheter (IV in the chest) and started TPN (IV nutrition/vitamins)...I spent 3 weeks in the hospital, got out on August 25th...it was way too long...more to come, laptop battery croaking...to be continued

 I pray that my strength in my body can hold out long enough to get on our train from Chicago to Cleveland. It leaves at 7pm and arrives about 2am Ohio time. My appt is not until 3pm so Toni and I will be hanging the do not disturb sign at hotel so we can get some sleep. I'm not yelling at anyone, but if the doctor left this j tube behind to use in emergencies and has passed up the biggest emergency by not using it, then I want it out!! These feelings are so terrible, you feel like you're starving to death; I feel spacey, lightheaded, sweaty, shaking, and all the low blood sugar crabbyness that you can imagine. I'm really nice to be around. We went to a wedding last night (scheduled before the surgery for some good friends), and I couldn't eat anything the first 2 courses, but the entree came and mine was a beef filet in gravy, mashed potatoes, and asparagus. It looked and smelled so good. I ate 4-5 bites of mashed dunked in gravy, my hubby tried the filet and said it was amazing, so I tried a microscopic piece that I chew thoroughly (it was amazing), but I skipped the asparagus.  It went down ok, but by the end of night I was so full of painful gas that it was scary. I'm scared about traveling today, but my daughter is with me and I know she's got my back and luggage! I'm going to take advantage of Amtrak's red cap/golf cart service to get us and our luggage to the train (it's a long walk down a narrow walkway).  There will be some heavy discussion at doc's office to get this right. I'll keep you guys posted. Adios for now. All aboard and choo choo! 

 Well, a week after the ER visit I'm still in the same shape, it's very frustrating. I have gotten a phone call almost everyday from the PA at Dr. Kroh's office telling me how he keeps leaving msgs for the nutritionist that Dr. Fenske's office referred me to but not getting a return call, I told him "welcome to the club". My real question to him is why do we need the nutritionist? Why hasn't he just ordered the tube feedings? Are they waiting to see me in person on Monday to see how bad I look?! Toni & I are getting on the train Sunday for Cleveland and I'm sitting here shaking and weak after helping Toni give the cats a bath (which contrary to what would be the norm, cat bathing in our house is pretty low impact, some unhappy yowls, but no real physical challenge). It makes me pretty nervous to get on a train and travel, I'll try not to think about it. 

 I had the complete gastrectomy with Roux limb reconstruction and J-tube placement on July 6th at Cleveland Clinic with Dr. Kroh.  It was a butt-kicker, but I knew it would be.  The surgery went fine, and I'm sure Dr. Kroh has seen a lot of weird stomachs, but he said mine was very bizarre...spongy and lumpy, kind of like a muscle that has atrophied from lack of use.  I spent 12 days in the hospital.  I needed 2 units of blood after surgery, by blood count had dropped below 8.  I was also experiencing tachycardia (high heart rate), at rest my rate was about 125, and if I got up at all it would jump to the 150's.  I think in the end they chalked it up to surgery stress, loss of blood, and pain.  Pain, that's one I could do without...it's been 3 weeks and I'm still in so much pain.  I also had some atelactesis while in the hospital (collapsing of the alveoli in the lungs due to not being able to take a deep breath).  I have a huge incision from right under the breast line that goes beyond the belly button.  I still have my staples, getting them out on Monday.  I had 2 drains which they removed right before I left the hospital, there was one that was super long because it went all the way around and behind the liver, and I believed it when they took it out, yowsa!! I was on full J-tube feedings when I was in the hospital, but it's better to eat through your mouth than a tube so they sent me home without them to see how I could do on my own.  I haven't done too well, I can only eat or drink so much, it's very tight in there with esophagus straight to small intestine, no real pouch.  I went to my local ER for dehydration on Thursday, got 3 bags of fluid (needed 2 before I could even pee), also had ketones and protein in the urine (a sign that your body is using its own reserves to live).  They only let me go home because they had gotten a hold of a resident at Cleveland clinic that agreed they would talk to Dr. Kroh the next morning and get the home health tube feedings reinstated, unfortunately that never happened.  Dr. Kroh was in surgery all day, I'm still trying to sip what I can and take small bites of pudding/yogurt/anything that will stay down, but I feel like I'm back in the dehydrated gutter I was in on thursday, muscles don't work and twitch, and very little sleep.  I'm trying not to look at now, I am looking to the future and having faith that this will help.  I saw a chef on TV the other day and he had his whole stomach and 95% of esophagus removed due to cancer about 5 years ago and other than being a little thin, he was eating and really doing well.  It gave me hope to see that, a lot really.  It's hard to come across people like us, and that's why I feel like this blog and website are important...I don't want anyone to feel alone, we never are, there's always someone out there that can empathize and you just never know who you may help.  Again, I have to thank all my family and friends who keep pushing me to the next step.  This is a really difficult hurdle for me, and that's why it has been a bit since I updated.  I hope this finds you all feeling better and at least on the right path to wellness.  Hugs, Jules

  I'm in Cleveland, we are trying to get in as much family time as possible while we are here, keeps some of the kids' anxiety down, but I can tell they are anxious and nervous. I hate that they are feeling this, it sucks. I want to take it all away from my family & friends and keep it to myself. I'm sure you all feel that way sometimes. I'll keep you posted as I am able to after surgery, it's a big surgery so I don't know how long the surgery will be. Thanks for your support & prayers Hugs