Friday = Chicago Traffic, Blood-work, and Transplant Clinic day (after a two week break)
This was our 6th visit to the clinic even though it seems we've been going there for a longgggggggggggggg time. Overall, the visit went well, but there were also lots of "glitches" and "changes" that for me, who wants to make sure we are doing things correctly before we leave the clinic when we are still with the people we need to talk to rather then trying to make telephone contact, made the visit frustrating. As usual, there was a lot of "hurry up and wait". We're used to that and figure that comes "with the territory", you might say, so we come prepared to spend our day there, and also don't make plans for other things on clinic days.
As usual, we started our morning in the "Chicago Traffic" on the Eisenhower (or rather took the back roads and got on the Eisenhower at Harlem. After parking, we registered at the registration office and then went up two floors to the lab for Gary's blood work. As usual, we stopped at one of the benches before getting on the elevator to go to the clinic so that Gary could rest and take his pills and we could finish eating breakfast and also call home to make sure Andrew and Stephanie were up since it would be hard for them to reach us once we are in clinic.
After continuing on to the Transplant clinic by going back down to the 2nd floor and then taking the enclosed bridge between buildings up to the 3rd floor of the Eye and Ear Building where the Transplant Clinic is (last week I mentioned people looking for lab for blood-work and sign saying Phlebotomy, I guess one could say somewhat the same thing with the Transplant Clinic being in the eye clinic and no signs that say Transplant Clinic). You go through a maze of hallways of the Eye Clinic to the elevator and then down to the 1st floor and then through a few more hallways to the Transplant Clinic. As I walk by the desks of the Eye Clinic, I often wonder what they think of everyone walking through their offices, but then, I'm sure they are so used to it that it doesn't even phase them.
After checking in (and making sure I got our parking pass stamped and initialed so I could get the patient rate), we found seats and started our wait. I thought to myself, it sure seems empty today -- maybe it will be a quick in and out. Eventually we were called in for vitals but then sent back out to wait. Eventually we were called in again and seen by the Nurse Practitioner in training and after her examination and going over meds and questions, we finally saw the Doctor (there was a lot of waiting in there too -- something to do with the new computer system and our name not being in there for our appointment, and I had been hearing "rumblings" about a lot of walk-ins, so, I'm guessing that there were others whose names weren't on the list either). Gary's end result of his checkup is that he is doing well. The doctor is happy with his walking (approx 1.1 miles) and fluid intake (approx 3.5 liters) and lack of dizziness. His Blood Pressure is also starting to go back up, so he was taken off of 2 medications that were helping to bring it up. If his blood pressure continues to do well, they will probably take him off of the other medication that is helping it. She did say that eventually he may have to go back on his blood pressure medication he was on before transplant surgery or a different kind of medication to keep it at the correct levels and from going too high. They had also done blood tests on his cholesterol that no on had told us should be fasting blood-work (they've always said he could eat breakfast but not take his pills before the blood work) so, once the Nurse Practitioner realized that the results were from non-fasting blood-work, she was quite happy with the results, in fact, very impressed.
"When 4=5 and 1=2"
Since they have started a new computer system, check out was different then usual, but still confusing at least to me -- just when you start getting used to one system, things change, but then, by now, we should be used to change. Anyhow, when I was brought Gary's checkout papers with his next appointment and waiting for the new, updated medicine list, I looked over the packet of papers that they had given me -- (something new), and noticed that the doctor appointment that they gave Gary was in 5 weeks, not 4 weeks as we had understood from the Doctor, then I noticed that he was supposed to have blood-work on a different day then the appointment day. I talked to the person making the appointment and she said that they were overbooked in 4 weeks so that was why 5. Then I asked about the blood-work and she said that was what the Doctor had requested. I asked if she could please double check with the doctor on both the appointment and the blood-work because we had understood from her that it needed to be 4 weeks and that blood-work only at the appointment time. She came back and told me that the doctor was fine with the 5 weeks and that she said that Gary should have blood-work at 2 weeks and then again the day of the appointment, therefore the parts of the title "When 4=5, 1=2".
"Protocol = Familiarity"
While waiting for the questions to be answered, I was looking at the new medicine update sheet I was given. I noticed that the milligram dosage for one of his medicines, an over the counter one, was different then he had been on before the transplant, and different then what had been placed originally on his sheet as to what he would change to at some point, so, when I questioned the clinic pharmacist about that since none of the doctors had ever told me any different, she said that she had changed it since that was protocol. They would give the dosage he had always been given only if he had a heart attack, but even with his family's history, that was not a reason to give the higher dosage and protocol dictated the smaller dose. I have left a call with the nurse and she was going to e-mail the doctor about it but said my question was a valid question, but she didn't want to call the doctor since she was hopefully sleeping and had been up all night because of transplant surgery. I agreed that it could wait but that meanwhile we agreed that I would give the higher dosage as he had been on before and had been set to go on originally after the other medication after his transplant surgery, therefore the part of the title "Protocol = Familiarity".
Lest one thinks questioning is something I enjoy doing, you don't know me well. I would much rather not question at all, but I've learned that I need to. I tend to feel very intimidated by a lot of these people, and questioning even those whom I am comfortable around is hard for me for fear that they think I know more then they do. Far from it! My questioning comes from wanting to make sure we are following the directions correctly, and making sure things are safe and that we are doing the right thing for, in this case, my husband, so that we are doing everything we can to keep these gifts that he received of a new Pancreas and Kidney. Also, I find it much easier to question while we are still at UIC rather then when we're home and then have to call and try to get answers.
"You lost a lot of weight!"
Today, Monday, June 17, we had our first visit with one of Gary's pre-transplant doctors. We were actually supposed to have gone to see his Heart Doctor last week, but somehow, I (or should I say we) forgot the appointment even with having gotten a reminder call 2 days before and having it on our calendar -- I blame that to brain overload.
Our appointment for Gary today was with his Nephrologist (Kidney Doctor). It was the best appointment that we've ever had there, but then, how many people can go back to their doctor and in 2 months, have their weight drop almost 30 lbs and have the doctor not be concerned about such a quick weight loss without fear of there being another problem? The doctor was very happy with how Gary is doing and especially happy with all of his Kidney Function numbers as well as his blood glucose numbers that just 2 months ago had not been very good. I did have to chuckle when the student doctor we first saw commented that his A1C number was good, but really could be better. It was 6.2 the last time it was checked at the transplant clinic. I did remind him that the A1C number is an average of the last 3 months of blood sugars and that since the transplant was only 2 months ago, one of the 3 months was still when his pancreas wasn't working and the blood glucose numbers were still all over -- he realized he'd forgotten about that. It will be interesting to see what it comes down to after 3 months post transplant, but for now, we are quite pleased with the 6.2 and how steady his blood glucose numbers have been. The other great news is he doesn't need to go back to the Nephrologist (Kidney Doctor) for 6 to 8 months (before transplant it was anywhere from 2 to 4 months depending how his kidney numbers were.
Prayers of Thanks and Prayer Requests
1. Thankful that Gary was able to go to Andrew and Stephanie's Graduation. Peter brought Gary just before graduation just before the kids marched in and left right after they marched out. Gary wore a mask per the doctor's orders, and they were able to sit in 2 chairs that those in charge of graduation from school had nicely set up for them against the back wall behind the pews. It was so nice for him to be able to be part of their graduation and to see Andrew give his Salutatorian Speech as well as see both of them graduate with high honors. He had been too sick yet to be at church on Mother's Day when Andrew and Stephanie made Public Profession of Faith, so we were so glad he was well enough to go to this. He was also able to come to the small graduation party we had afterwards by our sister-in-law, niece, and great-nephew's home.
2. Thankful that Gary has also been able to join us at church a couple of times -- there again he wears his mask, comes around the time church starts and has left right a way. The biggest thing is that for now, the doctors want him to stay out of big groups and crowds, but a lot has to do with common sense and especially staying away from people who are sick since his immune system is compromised.
3. Thankful that Gary is doing so well, and we've been able to keep him out of the hospital now for just over 5 weeks. He also hasn't had to be hydrated at the doctor's office for the past two visits, and it looks like, for the most part, we are able to keep him hydrated here at home. His appetite even seems to have come back.
4. Please continue to pray for continued healing for Gary and that he keeps progressing.
5. Please continue to pray for strength and energy for Nelly. I continue to struggle with pain, lack of energy and lack of restful sleep.
6. Continued patience with doctors, nurses, insurance, pharmacists, and any others from the medical field that we need to deal with. Prayers that I won't feel so intimidated, inferior, and frustrated when we have questions. I want to make sure that we are doing the best we can for Gary.
7. I still pray for the family who lost someone precious and gave us the wonderful gift of that person's Kidney and Pancreas so Gary could have a better life. I am so thankful they chose to do that in their time of grief.
We are so thankful for the continued prayers of all of you, our friends, family, and our church family. We feel so blessed by the Lord for each of you that has and continues to walk with us on "this journey". I know this post was long, and my kids "gently" remind me that I write way too much, and I "gently" remind them that they can write the blog, but, none of them have taken me up on doing that for quite some time. Oh well, I am who I am, so extra long posts it is, and sometimes it takes me a bit to process all the information after a doctors appointment or other things come in between, so therefore a few days to write my blog. I chuckled a few weeks ago as I was going through a box of "memories" that had been flooded so needed to be gone through and pitched, I realized that my children really have no knowledge of letter writing, or "snail's mail" like I and a lot of you do, but there were a lot of letters in that box of "memories" and as I was showing my children one of the letters from my Mom, I told them that I come by writing a lot naturally since my Mom was also good at filling the whole page as well as any margins that were on the paper. Before I threw these letters out, I took pictures of them so that I can go back and read through them again sometime.
Thank you once again for your continued thoughts, prayers, and other shows of kindness to us as we "walk the journey".
Love,
Nelly and family
Thanks be to God for his indescribable gift!
~ ~2 Corinthians 9:15 NIV
