So surgery is set for next Tuesday, March 3rd! As it gets closer I am getting nervous about everything. I am not concerned with the actual surgery but with what might cancel the surgery that I have no control over. This past Monday we went in for the final blood work and meetings with the surgeons etc…. It went fairly well except my surgeon was out sick so I met with a different surgeon. Now I would rather have met with my surgeon but if he has to get sick better it was the week before my surgery than the week of my surgery. We did learn that this surgery is very important to the Yale Transplant Center as it is the largest paired exchange to happen in the State ever, so it is in their interest to make sure it happens. Both Meg and I had to sign press agreements and agree to participate in a post surgery press conference if they are all successful. Apparently there is one altruistic donor in this paired chain that helped to make this all possible. So if we do a press conference we will all have to meet each other. My main anxiety comes from the idea of change and my natural skepticism to my ability to adjust to change. I am looking forward to feeling better, going back to eating a lot of foods I’ve been missing and being able to urinate like a normal person. I am not looking forward to the hospital but I must endure it to get the new kidney.
My treatments continue although we still can’t access one of my button holes. My nurse has given up trying and just puts one sharp needle in and then I put in the other needle thru my arterial button-hole (although it now has become the venus hole). My nurse has given up the thought of establishing a new button-hole although she will be able to if the surgery doesn’t happen, but she and my doctor said why bother with the Transplant so close. This week she has been coming to my house so I can dialyze at home so my schedule has returned somewhat to normal and I like that. I am off today and Sunday but will dialyze on Saturday and then again on Monday so I am down to only two more treatments and then this nightmare will be over. Now I will have a new set of challenges to deal with after the transplant but tomorrow is another day!
So my challenges with my Venus Hole Access continue. This past weekend my nurse came out and we tried my venus hole again after having letting the swelling reduce for like 4 days. I tried it with a blunt needle – no luck. My nurse tried it with a blunt needle – no luck! My nurse then put a sharp needle down my button-hole – NO LUCK! So we went back to a sharp needle in a different place – I am starting to feel like a pin cushion and my arm is starting to look like one giant bruise. We can do dialysis this way it is just a pain to have to take my supplies into my training center. Hopefully we will settle upon a schedule where I go in for a couple of days and then my nurse comes to my house for a couple of days.
Monday Meg and I went to Yale New Haven Hospital for both the pre admission screening and Meg had a blood test and an EKG and I just had an EKG. The screening was basically the same info I did in December about the drugs I am currently on and what to do the night before surgery and the morning of surgery. After the Yale appointments I came home and gathered supplies to take to my Dialysis Home Training Center for treatment. My nurse had scheduled me to see Dr. Rosenblatt about my access on Tuesday, during which he confirmed my vein has moved and then he did another fistula gram. This is where they look at my vein and then put a balloon up in and inflate it to change the location of the vein. He then drew on my arm where he believes my venus access should be. It is apparently about 2mm off from the current button-hole.
So at this point I don’t know what we will do. My nurse can try to establish a new button-hole. This takes about 7-9 treatments with a sharp needle being inserted into the same spot at the same angle. Then I can continue to use it with blunt needles. The problem (good problem) is that I only have like 8 treatments until my transplant! In other good news they have given up on the emla cream as this creates a skin reaction that is very annoying and the think is what created this current problem. They are now injecting near each access site with lidocaine, a numbing agent that makes the needling experience pain-free. While it creates a pain-free needling, it is more needles being injected into me and that is nerve wracking. Hopefully this will all end with a successful transplant.
In other news – Carolyn is having a blast in Spain. She has started her classes and her internship with a local K-12 school. She is making friends and has planned a holy week trip to the rest of Europe – she will go to Prague, Berlin, Amsterdam and Paris. She is also booking some weekend trips to Barcelona and Italy. It is hard to think of a weekend trip to Italy so think of it as like a weekend trip to Chicago. Once you are on the other side of the atlantic it is not as big a deal to travel within Europe. Then she has a spring break trip (as to opposed to a holy week trip) to Morocco with the program she is in Granada for. She should return a seasoned world traveler!
Wedding plans also continue. This week we ordered invitations – this should give me something to do during my recovery from surgery period. Kate also met with a florist in Providence this week and we got the final menu plans (minus the desert option) from the caterer for the reception. Kate is coming to visit this weekend for my birthday and we hope to make some more decisions and review the first proof of the invitation. And because there is not enough going on I am in the middle of getting the info together for my taxes and I have to complete Carolyn’s financial aid forms. All before the surgery! Keeps my mind off of my dialysis challenges.
So it was exactly a year ago today that I had my first appointment with the transplant center at Yale New Haven Hospital. An awful lot has happened in the time since my first appointment. Meg and I went to the appointment not knowing what to expect. We found out at that time that Meg might qualify to be a kidney donor so she went thru the testing that day. In March we found out that she was a match for me except that we both needed to lose some weight before they would approve a transplant – Meg 10 lbs. and me 20 lbs. This seemed like a difficult task but possible. Working very hard Meg hit her goal in early summer and started doing the other testing (24 hour urine testing, multiple blood testing etc….) I was behind her but eventually in the fall of 2014 I hit my goal weight. Then I had to quickly get a stress test and an echo cardiogram and more blood work. Then I had several exams at the Yale Transplant Center and the final blood test and was told one of my blood levels was too low. So we quickly added a drug to bring that level up and it worked and all was set to move forward. We had a date, I did one last blood test, my daughters were schedule to be here, I had finished all my Christmas Shopping and most of the wrapping – we were all set to go. Then I get a call telling me were cancelled due to a problem with the final blood work, it looked like I would reject Meg’s Kidney so they don’t want to risk the surgery. Merry Christmas – no transplant!
Well now it seems there is a hope of a transplant thru the paired exchange program. There are 5 donors and 5 recipients lined up as part of this exchange and Meg and I are two of the cogs of this giant wheel. With so many people involved a lot has to happen correctly for these to happen. Most of all I need to make sure my current treatments are proceeding properly. Normally this would not be a problem but Sunday evening this past week I put in my first needle (arterial needle) fine and then could not find the vein for my second (venus needle) hole. We tried like four times and spent like an hour at it and finally gave up. Monday evening the same thing happened and I spent even more time at it on Monday. So now I have not dialyzed since Friday as Saturday was a scheduled off day. So Tuesday, Wednesday and today I went to the DaVita Training Center and my training nurse couldn’t even get my venus vein. So she by-passed it and put a sharp needle in and we have done treatments that way three days this week. Slowly I am getting back to normal. I also put online 12 pounds in the four days I missed dialysis. It is mainly water and we have since taken off like 7 of those pounds but I need to get back to my surgery weight to make sure that I do everything to make this transplant happen.
Meg and I are scheduled a couple of more times at Yale New Haven Hospital for testing etc…. Next Monday (2/16) we both go in for pre admission screening meetings and then Meg has another blood test and also an EKG. I have the pre admission meeting and then I have an EKG. Then the following Monday (2/23) we both go back for final blood work and then meetings with the Pharmacist, Dietician, Social Worker, and both of our Surgeons. In the meantime I am trying to lose weight and not get sick. If everything works out, the surgery will be on Tuesday, March 3rd! We are cautiously optimistic. It would be great to be done with dialysis. I can’t wait to urinate again. There are foods I have missed like milk, peanut butter, ice cream, and chili. Most of all I want to be free for the weekend of Kate’s wedding. Originally we hoped to have the transplant in December and be able to visit Carolyn in Granada but now I won’t be allowed to travel until after she is back in the United States. So we are doing everything we can to make sure that March 3rd happens as scheduled!
So we got Carolyn off to Spain – finally! She was scheduled for a flight on the Monday evening of the Blizzard of 2015 which turned out to be just a major snow fall and not the blizzard they anticipated. But the roads were all closed between home and JFK and the flight got cancelled and she was rescheduled for a flight on Wednesday. I thought that more students would have been delayed by the storm but apparently only Carolyn was delayed getting to Spain, so she had to get herself from the Malaga Airport to her home stay in Granada. She finally made it although it was a very long day while we waited to hear from her that everything worked. She hooked up with her home stay host and then eventually with the people from her program and she is in full orientation now and having a blast! Her orientation goes thru this week and ends with a two-day trip to Seville before her classes begin the next week. She is also doing an internship with a local business. So far her Spanish is holding up but the hope is that she becomes as fluent as possible. She also will be doing a couple of short side trips, one thru her program for a week to Morocco. She also has Holy Week off from school so she may try to do another trip that week. While she is having a great time her mother and I can’t wait until May when she returns.
Meanwhile my treatments are continuing. I have been taking off more water in an attempt to lose some of the weight I put on over the Christmas holidays. My weight has come down to my surgery goal weight but the side effects have been some considerable pain from cramping. It has come in some weird places like cramps in individual toes and fingers, in my ankles and on the inside of my upper thigh. Not usual places that I get dialysis cramps and very painful. I have been treating this pain with tonic water which usually helps but has not been lately. The cramping has been keeping me from sleeping for any length of time. I get to sleep and then get a cramp that wakes me up with considerable pain. I am trying to keep my weight as low as possible because I will not get much notice of an impending transplant and I don’t want anything (like my weight) to prevent or postpone it again. I have to be ready on like a weeks notice – so I must endure this cramping for now. I am meeting with my nephrologist next week and will ask him about the cramping.
Meanwhile the planning for Kate’s Wedding continues. Earlier this week we reviewed the wording for the invitation and this weekend we will meet with Kate and Kenny and finalize the plans for the invitation. Meg and I are going to Providence this weekend for a tasting at the Providence Public Library with Kate and Kenny. We will sample potential hors d’oeuvres as well as potential meals for the dinner. We will also meet with the wedding planner from the caterer and hear their ideas of what has worked at other receptions. It is just a one day trip to Providence. We may try to do a couple of other stops along the way and hopefully have some time for Meg to start dress shopping.