So this past week has been one of ups and downs, frustrations and elation. It started with no real news from Yale about preceding and then on Wednesday we talked with my transplant coordinator about possible dates in December for the transplant but there was some confusion about my BMI and what is my actual height and weight. Then at the end of the week I got a call from Yale that I have a new transplant coordinator and that I need to re-do my stress test and the echo-cardiogram and that until I can get the heart approval I will be on the inactive list. I tried in vain late Friday to try to schedule these tests with my cardiologists office but apparently they need to be ordered by a physician so I called back to Yale and asked them to have the Doctor fax an order back to my cardiologists office and to contact United Health Care about approval for the test. So over the weekend I was very depressed over lack of positive movement but as long as I could get the heart testing done in the next ten days I should still be able to make a January transplant date before Carolyn leaves for Spain.
Late Sunday evening I got an email from Yale that they can do the heart testing at Yale. My new transplant coordinator called today (Monday) and told me that Yale will do the testing this week and that they are scheduling me for a December 16th Transplant! So it looks like everything is starting to come together to make this happen. Apparently Yale has the approval from United Health Care to do the Transplant and whatever testing they deem I need to get that done. Now I am sure that a lot of other things need to happen but once Yale gives me an actual date they will make whatever has to happen work so that we can get this done.
I am still in that ecstatic phase and am letting my family know about these possible dates. I am sure that fear/concern will set in soon. As a part of my daily routine I follow some daily blogs of patients on ESRD (End Stage Renal Disease) and going thru transplants and dialysis as well as a large Facebook group with like 9000 members who are all donors or recipients of Kidney transplants. Recipients range from getting up and walking the same day as the transplant to up to a week in bed. Coming home with only aspirin for pain medicine to having months of high intensity pain meds. Obviously time will tell and there is not really anything more I can do to make it a smooth procedure. So it looks like I will get that new kidney for Christmas! December 16th is about 45 days away!
So I hit my goal weight to have the transplant! Friday night after my dialysis treatment I weighed in 1.2 pounds under my goal weight. I have been working at losing weight forever, but in February when I met with the transplant center they told me I needed to get down 20 pounds to hit my optimal BMI (Body Mass Index) for the transplant. I am down a total of 90 lbs. since my peak but about 50 of those pounds I lost in the period when my kidneys had failed and I hadn’t yet started dialysis (June 2012 – May 2013). Back then I had to force myself to eat. When I first started dialysis I got some appetite back and started to gain a little bit of weight back. In January 2014 I started to exercise regularly although at first it was just like 20-30 minutes per day and then I would be wiped out for the balance of the day. Now I am at the point where I go to the gym and do like 60-90 minutes of cardio and then I can still come home and do some yard work or house elf chores and then I am out – but I am making progress. I still avoid doing any weights because any isometric exercise in my left arm moves my veins and then I have trouble during my treatments.
After hitting my weight I emailed my dietician and the transplant coordinator at Yale New Haven Hospital. I also had to fax them the flow sheet (daily record of my treatment) for my Treatment on Friday. Now my case has to go before the transplant panel and they assign a nephrologist and surgeon to my case and then they can schedule the transplant. I have no real idea how long this will take but have been told by YNHH that usually it is about a month from when you tell them you hit your weight. So hopefully around Thanksgiving I will have a used kidney compliments of Meg! I have a lot to be thankful for!
The balance of the weekend was nice. On Saturday Meg went to the Sheep and Wool Festival in Rhinebeck, NY. I went to the gym and then did some browsing at Home Depot in the afternoon. Sunday Meg and I went for a drive thru Litchfield County. We stopped and did some window shopping in Litchfield and then went to the White Memorial Foundation nature center and did a 3+ mile walk in the woods. Then we had a very nice late brunch at the White Horse Tavern and then a leisurely drive back to Shelton. It started our very overcast but the sun burned thru and was a nice day – although very windy and cold in the shade. It was a nice day in the country and now back to the work of getting ready for a transplant.
So last Tuesday I went and had a fistula gram where they shoot my access full of an anesthetic and then scan my access to see where if it needs moving at all and then put a balloon up it and inflate it to move the vein. I have it done every 3-4 months as routine maintenance on my access and while it does hurt a little, if I don’t have someone to drive me to this appointment they won’t give me the anesthesia and then it really hurts. Last weeks procedure seem to go fairly well until the anesthesia didn’t seem to wear off and the whole area of my button holes remained numb, but under the skin, and felt kind of weird. After calling the doctor’s office on Thursday they called back on Friday and I had another visit Monday. The numbness has gone down some since then but it is still there. After explaining everything to first the receptionist (just to get an appointment) I then went thru everything with two different nurses and then a Physicians Assistant and finally got to see the doctor. After all this he decided it is not really an issue it is just a hematoma in my arm where some of the blood mixed with the anesthesia in the area of my button holes. Now the good news in all this is that while putting my needles in I have no sensation of discomfort at all, but it just feels weird to not feel anything.
On Tuesday I had my monthly appointment with my Nephrologist. We review my blood work for the month and generally how things are going and they review my medications etc…. This month I actually saw my nephrologist, Dr. Kim! The doctors in the practice rotate their visits with the patients on dialysis at the various clinics and centers so that the patients get to know all the doctors and vice versa. Every order is reviewed by Dr. Kim and he consults with all the other doctors regularly but I hadn’t seen him since last November. The visit went fairly well although my phosphorus was a little high so we need to redo the blood test for this month. He knew about my progress towards a transplant and didn’t change any of my treatment plans so that things stay as normal as possible up until the transplant.
On the transplant front I am down to only 1 pound to go. This sounds so easy to do yet at the same time incredibly difficult. Most of the weight we possess is in the form of water from the liquids we consume. I eat so little that the actual food converts to energy or waste but the water is only removed thru dialysis. Today is a day off from treatment so I will not lose any weight and will probably go up like 3-4 pounds by the time I do a treatment tomorrow.I can take that off in a day or so of treatments but if I take off too much and get below my “dry” weight I tend to get cramping in my legs, feet, stomach and/or jaw. Despite all this I am still hopeful that I will hit my goal weight by next week and be able to schedule the transplant.
So this past weekend we went to Providence to see both Kate and Carolyn. The main purpose of the trip was dress shopping for the wedding and the good news is that she has made a selection and we have ordered the dress! Other than she looked great don’t ask me to describe it other than it has a V neckline in both the front and back and is Champagne in color! The bridesmaids also have selected a dress for the wedding. We also visited St. Dominick’s Chapel at PC where the wedding will be and the hotel we are planning to stay at for the weekend. Both will work well for the wedding. It was also our anniversary so we all went out for a nice dinner – Mexican on Federal Hill! It was great to see the girls and it will probably be out last trip until after the transplant and recovery.
So this weekend we are in for another weekend of wedding stuff! On Saturday we are meeting Kate in Providence to go look at wedding dresses. Joining us is Carolyn (who is flying in from Ithaca) and two of Kate’s bridesmaids. We also plan to visit the hotel we are reserving for rooms for the wedding weekend and explore some of the myriad of details associated with this event. Meg and I are excited to see both our daughters. Carolyn is flying in to Boston since we couldn’t get her a flight to Providence and she has to get up at 4:00 in the morning to make the flight but she is young and can sleep on the plane. On top of all this it is our 29th Wedding Anniversary on Sunday! 29 years ago we pledged better or worse etc… and little did we know that would mean planning for a kidney transplant. Other than a nice celebratory dinner on Saturday night we don’t have any major plans for the anniversary. Major celebration will happen only after the transplant.
Medical wise – last week I had one day where I had to abort a treatment due to my inability to tap into a vein for my venus hole (upper of my two button holes). That was last Thursday. On Friday, Saturday and Sunday I was able to hit the vein although a couple of those days took multiple attempts. On Tuesday of this week I had an appointment to have my fistula looked at and surgery performed to give it a fistula-gram, which is where they scan the access and then if necessary put a balloon up the vein and inflate it to move the vein. I have had about 6 of these in the past as part of routine maintenance on my access and buttonholes. At the start they give my access a shot of an anesthetic that numbs my access a little to prevent the pain. Usually it fades fairly soon after the procedure. This time it is still numb two days later. After the treatment I can understand and when I put my needles in on Tuesday, everything went well except I had no feeling in my access and felt nothing of the needles going in – which is very different from normal. Wednesday was a day off treatment. It was still numb this morning (Thursday) so I am calling the surgeon’s office that performed the fistula-gram.
I wrote the above post on Thursday and then Thursday night had a horrible treatment.
I had a horrible treatment last night (Thursday). I put in my first needle with very little trouble, and even the second needle when in fairly easily but it was not a good stick. I am not really sure what happened but my venus needle pressure was so high (around 800 when normal pressure is around 200) that the machine kept shutting down and it was now full of my blood. I called the Davita On Call nurse and unfortunately got a guy that is a Peritoneal Dialysis Nurse and knows nothing about Home Hemo – but he said he would call my Training nurse. I then called the NextStage 24 hour help desk and their solution involved throwing out the cartridge and starting over. This would force a blood loss of the approx 190 cc of blood that is in the cartridge. Then my training nurse called and she was able to talk us thru the problem. We hooked up everything to the saline bags and just re-circulated that thru the machine so the blood wouldn’t clot. Meanwhile I took out the venus needle and re-needled my Venus Hole (upper hole). Got a very good stick into my vein this time and was able to restart the treatment. It added about an hour and a half to the time and my Blood Pressure went sky-high during that time, but was back to normal by the end of treatment. I did have some blood that was diluted by saline that went into me which is not a problem except I am trying like crazy to lose weight and this just adds weight. I finally finished everything and was cleaning up during the Jimmy Fallon monologue!
Special thanks to my care giver Meg and Wanda my training nurse. I just had to sit there since I had two needles in my arm and can’t move. Meg had to do most of the work except when I was putting the needle in my access. Wanda knew just what to do once we explained what was happening and she patiently talked us thru the procedure. Now we have trained for these types of procedures but that was a year and a half ago and if you don’t have to use them, which we haven’t, you forget things. If I was in the center for dialysis the nurse just deals with everything but we still prefer the freedom that home hemo allows us.
So my weight loss efforts are finally paying off. I am down to needing to lose around 2 lbs.! I have been pretty serious about both my diet and my exercise routine. Dieting was a challenge but we have finally gotten used to much smaller portions, no carbs, lots of salads, and no desserts. It was a hard adjustment because a lot of what you would think of as “healthy” foods are not on my renal diet. I had to get used to no dairy, no beans, no nuts, and certain vegetables are out as well. Exercise has been mainly walking. I try to get to the gym, or the beach, or a park to walk in at least 6 times per week. When I started in January I could only do about 15 minutes at a time and then I would be dead for the rest of the day. Now I can go up to around 90 minutes on the treadmill. I don’t do any weights because every time I use my hands for any weights – even gripping – I tend to mover my veins and then can’t find blood when I do my treatments. This happened most recently on Thursday of this week and I was forced to abort my treatment. It was also the day that I was doing my monthly blood test and that got aborted also because I need samples both before and after treatment.
I spoke with my transplant coordinator, Joyce, at the Yale Transplant Center this past week. I told her I was about 5 lbs. away and asked what are the next steps in this process. She said as soon as I hit my goal weight to let them know and they can then schedule the transplant. Once my transplant is scheduled I will have visits with the Yale nephrologist and the surgeons. So hopefully by the middle of October I will be able to call them and we can schedule the transplant. Our goal is to try to have the Transplant before Christmas! Joyce told me it is about a month between calling when I hit my weight goal and the transplant. I am nervous about the transplant but at the same time excited and looking forward to getting off dialysis. Apparently the whole recovery process is more involved than you would think. I am not yet sure how that will go and what exactly to expect. But that will be questions for the Yale nephrologists and Surgeon.
Not much else going on. This past week I did attend a retirement dinner for a fellow co-worker. It was nice to get out with Meg and see people I have no seen much since going on disability. Next weekend we are planning a trip to Providence. Carolyn is flying in and we are hooking up with Kate to go dress shopping for her wedding. It will also be our 29th Wedding Anniversary next Sunday, October 12th, so Saturday evening we will do a big anniversary dinner with everyone in Providence. So this week will be a daily two hours at the gym to lose this final 2 lbs.!