Home Again

I did finally get home after 6 pm last night, and was very glad to be home. It had been a rough day. I had dialysis, and they took off 2 liters – 4.4 lbs of fluid. After that, my pulse and breathing rate were very high and my blood pressure was very low. They gave me metadrine and intravenous albumen, and things got somewhat better. I was a bit nervous about going home in that state, but was also glad they decided it was safe for me to go home.

The nephrologist (kidney doctor) at the hospital dialysis center said I still had a lot of fluid in my lungs and in swollen legs, and I’d be much more comfortable if that were taken off. At first I resisted, because I was already down to 120 lbs, lower than I had ever been since my wedding 45 years ago. But then she said what should have been obvious, that the extra fluid was harming me, not helping. She suggested that I ask to have an extra day of dialysis where they just remove fluid, they don’t clean the blood. Today I called the dialysis center, and they agreed to do the extra day, but they didn’t have an opening today, I have to wait until Saturday.

This morning I was having trouble breathing. I have an “incentive spirometer” that they give you in the hospital to help you breathe. A few weeks ago, I was able to get it to over 750 and sometimes close to 1000. This morning it was between 250 and 500. I talked to my surgeon’s wonderful nurse practitioner and considered going to the emergency room so they could send me to the hospital’s dialysis department to remove fluid today. Ken and I decided to put that off, since a trip to the emergency room takes forever and is itself exhausting.

Even though I was short of breath, I couldn’t resist calling Laura Wetzler, Kulanu’s former coordinator for the Abayduya for about 14 years, and a dear friend. She had written with an idea about how to respond to recent flooding in Uganda, and I wanted to catch her up on who else was responding. We had a great conversation, she agreed to get at least a little bit involved again, and instead of getting tired out by the conversation, I felt more energetic and my breathing had improved!

In the course of this week, in addition to my health challenges, I’ve accomplished some major projects for Kulanu – creating a year-to-date financial report in dialogue with our accountants, and preparing a report for our board on all our projects in Uganda. I’ve also had wonderful phone conversations, WhatsApp messages and emails with people in Uganda, Ghana, Zimbabwe, Israel, and the US who are by now ckise friends. I also arranged for Keshi Taryan-Kigel, Kulanu’s wonderful multimedia manager, to prepare a slideshow for me to present with my report on our work in Uganda. Whether it’s a financial report for the board or a connection with a colleague, this work lifts my spirits and keeps me energetic and joyful.

By tonight, the incentive spirometer is going over 500, a much more comfortable place to be.

In the meantime, the painful skin tear on my leg has gotten worse, not better, and it turns out that Jessica, my aide, is an expert at handling skin tears. I decided I’d rather have her change the dressings than the special wound nurses from the Visiting Nurse service!

We’ll see whether the dialysis I’m having tomorrow and the extra day of fluid removal on Saturday help my breathing and swelling and/or whether it knocks me out. I’m hoping to be strong enough to present at Sunday morning’s Kulanu board meeting! If not, others will cover for me.

Read Full Post »

Kvetching!

I’m back in the hospital! I hope it’s only for one night. I came for an outpatient procedure,  “debridement,”  where they clean out dead or infected tissue.  I was told I would be going home by 4;30.

But then they had to call in plastic surgeons to close it up properly,  and they put in a drain, and they have to monitor this until tomorrow.  Now they say there’s a 99‰ chance I can go home tomorrow  but as you can imagine,  it won’t be a surprise if they keep me longer.

I wasn’t allowed to eat anything after midnight last night.  When I woke up from surgery,  they told me I wasn’t allowed to eat until 8 pm. I waited patiently and reminded the nurse. I reminded her again at 9, 10, and 10;15, but no food. I finally asked if she had snacks on the floor,  and she got me crackers and a dry tuna salad sandwich on white bread. I don’t know why she didn’t offer that earlier. I told her this food situation was unacceptable and she said it wasn’t her fault.

At least I sent Ken home early and had Jessica stay until 10, so I had company and Ken had a break.

Crazily, when I had just woken up from anesthesia and was still groggy,  Ken reminded me that I had promised to activate Excel on our laptop. This was not trivial,  since we get Microsoft Office through Microsoft’s nonprofit donations program,  which is much more complicated than a private copy of Office.

So,  in my groggy state,  I called Microsoft tech support and spent 45 minutes and got it activated –  something I had meant to do for months. As usual,  I was proud that my brain was functioning well even when it’s groggy and even if my body is struggling.

One friend says she appreciates that I “tell it like it is.” She also has severe health issues. Her remedy is “howlimg at the moon.”

I’m ready to howl. I’m tired of all this!

Read Full Post »

Ups and Downs and Up a Bit Higher

I got home from rehab on Tuesday, August 2, almost two weeks ago. Since then it’s been a soap opera of dramatic episodes, but at the moment things are much better – I was able to walk about 4.5 city blocks in my backyard park Saturday afternoon! You can stop here if you don’t want the play-by-play verbose version of the story, which is long since I haven’t written in two weeks.

Of course, I was thrilled to be home.

Dialysis and Doctors

On Wednesday, I started dialysis at the Rogosin Center at 55th St. off 11th Ave, very close to my home. I was welcomed and oriented by a nurse, social worker, and nutritionist. Everone I have encountered is kind and accommodating, including the lovely receptionists who greet me warmly when I arrive. For now, I prefer to go to the center rather than have home dialysis, because it gives Ken four hours off during each session. I relax in the reclining chair in the dialysis center. I can do work or talk or play solitaire on my phone, listen to a book, or sleep.

I also had a million appointments – dialysis three times a week, pulmonologist, GI doctor, visiting nurse service nurse, occupational therapist, and physical therapist.

Infection in My Surgical Wound

At dialysis on Monday, August 8, they noticed that the incision from my heart surgery had a small area that was open and infected. They put me on antibiotics. The following day, last Tuesday, I was feeling weaker, having more trouble breathing. I went back to using oxygen, which I hadn’t needed since I got home.

The Blessing of Grandchildren

Margie and her kids arrived midweek, and on Thursday morning I got to accompany the kids to the playground and just enjoy watching them play. I took a moment to say the shehechianu prayer of gratitude with Margie that I was able to experience this happy moment after having been cooped up for so long in the hospital.

Clearing My Infected Wound

That afternoon, I saw my surgeon and wonderful nurse practitioner, and the surgeon dug around with a sharp tool to try to dig out the infected tissue in my surgical wound. He finally decided to schedule me to come to the operating room on Tuesday, Aug 16 for “debridement,” where he cleans out the infected and dead tissue. That will be done under mild anesthesia.

Bleeding

The medical staff put a dressing on the wound and arranged for a visiting nurse who specializes in wound care to come daily to change the dressing. But by supper time, my clothes were dripping with blood at the dinner table. So my aide, Jessica, changed the dressing and helped clean me up and clean the mess. At 5:30 in the morning, I woke up in a pool of blood again. Margie described it as looking like a murder scene!

Thankfully, Margie and Ken rose to the occasion to clean me up and clean the bed and my nightgown, and change my dressing. By 11 am, the dressing was again saturated and leaking. but not so badly. The wound nurse came later, and that dressing stayed dry.

To the Emergency Room

On Friday, I was back in dialysis and the nurse told me my hemoglobin was down to 8.5, and asked if I needed a blood transfusion. When I got home, I called my surgical team after hours. At first, the nurse practitioner was clear that they don’t do blood transfusions unless hemoglobin is below 7. But then I looked at my pulse oximeter, and my pulse was wildly fluctuating, from about 70 to 150 up and down. The nurse practitioner told me to come to the NYU Langone Emergency Room where my team could come down and see me.

We got to the emergency room at about 11 and stayed until about 5 am – in bed at home by 6:30 am. I did sleep a bit in the emergency room as well. They did a chest x-ray, EKG, lab work. The hospital lab showed my hemoglobin was 9.2 – not concerning for someone on dialysis. The scary part was that they found two lab results very high, Troponin 1 and BNP which suggested I might be having a heart attack and required that they repeat the testing to see which direction things were going.

The next two hours were scary, as Ken and I read about what these tests might mean, and before I was able to repeat the tests to confirm that the numbers weren’t going up. The emergency and surgical teams then had a meeting with one another and concluded that indeed I was not having a heart attack and actually was safe to go home as long as I followed up with my physicians soon after.

Back Home, Rested and Stronger

When I got home, Margie has cleaned up and remade the bed, which I promptly got in and slept blissfully from 6:30 to 3:30 pm! I woke up refreshed and headed to our backyard park, where was able to walk about 4.5 city blocks!! It was a gorgeous day, and I was thrilled that I was getting my strength back.

Family Lifting My Spirits

At the same time that all this was happening, we were also having a delightful visit with Margie and her children and her best friend since 7th grade who had just returned from living in Germany. Diana was with her 7-year-old daughter, and Noa and Uriel immediately bonded. It was great having happy children in the house, especially because we have enough space for them to stay away if I needed to rest. Margie and Diana took turns looking after the children, so Ken and I didn’t need to help out – though, of course, Ken delighted in playing with the children. Margie and Diana were also very helpful with me during hours when my fabulous health care aide was off duty.

Back to Work, Cautiously Hopeful

On Sunday, I didn’t try to walk outside again, but I had a productive day preparing for next week’s Kulanu board meeting and doing various personal tasks on the computer.

My walking on Saturday made me feel I had turned a corner and was on my way to getting stronger. But recent experience says the path forward won’t be straight up!

I send my love. Harriet

Read Full Post »

Our 45th Wedding Anniversary Today!

Today is our 45th wedding anniversary, and Ken and I are still very much in love – more than ever. We’re so glad to be together at home.

I tend to plan parties at the last minute and would have organized a celebration today on Zoom, but I realized it’s Tisha B’Av, and this isn’t an appropriate day for a party.

I’m still making progress, it seems like two steps forward and one step backward – the backward days are days when I’m especially tired and make sure Ken or Jessica accompanies me when I walk around so I don’t fall. The occupational therapist yesterday strongly advised me to pace myself – if I do too much one day, I’ll be tired for the rest of that day and the next.

My appetite is returning, and we’re grateful to Jessica for helping with our meals. The kidney-related diet is very restrictive – I can’t have chocolate or nuts or multi-grain bread! – but I’m pretty compliant because I really want to do whatever is needed to regain my health. I was pleased that popcorn is on the list of things I’m allowed to eat – we’ll be making lots of popcorn, without salt, but with lots of different other spices.

The Rogosin dialysis center is an impressive place. The two receptionists know my name and welcome me when I arrive, I immediately met with a social worker, nurse, and nutritionist, all the staff are kind and accommodating. I bring my own blanket and pillow and wear a warm jacket since dialysis tends to make us cold. But I’m reasonably comfortable, can talk on the phone or do email, listen to a book on tape, or take a nap – and I don’t mind having the time there. And it’s very close to our home. The social worker has already arranged for us to use Access-a-Ride taxi vouchers to get back and forth.

For now, I’m preferring to go to the dialysis center rather than take on responsibility for dialysis at home.

Yesterday, even though it was hot, I took my first walk outdoors in our backyard park, and I was thrilled both to be able to walk a bit and to then ride around in a wheelchair and look at the beautiful greenery and flowers.

Happy anniversary, Ken!

Read Full Post »

We’re Home!

We really, really came home around noon today, and had a wonderful day. Everything looked beautiful to me – the ride through Central Park, the flowers in front of our building, the carpets and colorful folk art in our apartment.

They took four more pounds of fluid off me in dialysis yesterday, so now I weighed about 21 lbs less than I did a couple of weeks ago – and that made it much easier for me to move. I was able to stop using oxygen altogether.

It was great having Jessica’s help – Ken finally had a day to himself, and could take a nap, go shopping, have his beloved coffee at Starbucks. I kept being thrilled by little details, like sitting down to supper at my usual place in our dining room table.

I managed to walk from our apartment door to the end of our hall and back pushing the rollator (a walker with a seat). When partway there, Carol Kessner came down to check on me and I sat on the rollator and had a lovely visit with her.

We got a ride home in an ambulance, and they had room for Ken and Jessica to ride with us, and the two ambulance technicians were warm and lovely young women.

When we got back from walking down the hall, I sat on the rollator and supervised while Jessica made cauliflower/carrot/tomato soup – I showed her where things were in the kitchen and how to use our onion chopper and Instant Pot. The soup was delicious, though I still don’t have much appetite.

I’m going to try to attend my Zoom dance class tomorrow morning before going to my first dialysis session at the Rogosin Center in the afternoon.

I still need to do a lot of work to get stronger, but it’s improving faster than I expected, and I can see the benefits of the dialysis in getting rid of excess fluids.

Good night for now – sweet dreams! I’m going to sleep.

Read Full Post »

Going Home Tomorrow!

Barring any new unexpected developments, Ken and Jessica will pick me up at 10 am tomorrow, and I’m going home! My surgery was June 22, so this will have been a six-week ordeal.

I’m having dialysis right now, and will continue at the Rogosin Center on W 54th Street, not far from my home, on Mondays, Wednesdays, and Friday afternoons. I’ve been told that we can get trained to do the dialysis at home in a few weeks.

They took out the chest tube on Sunday, and that was a hopeful moment. This morning I didn’t use oxygen and was fine without it, though I put it back on for dialysis.

I am feeling stronger, though it will be a while before I can walk easily without getting winded.

It’s still a bit tiring to use my voice and talk on the phone, so I’ll need to be careful about phone calls and visitors, though I’d love to see or talk to every one of you.

Ken and I will celebrate our 45th wedding anniversary this Sunday. There aren’t words to say how devoted, loving, and wonderful Ken has been during this time.

Margie and family will be coming to New York for four days next week – it will be great, to see the grandchildren. Then on August 21, rabbinical student Shoshana Nambi and her daughter Emunah will return from Uganda and move back in with us – we can’t wait to see them as well.

There will be many appointments, between dialysis, Visiting Nurse home care, reconnecting with various doctors, starting cardiac rehab therapy after the home care.

But the bottom line is that I’m thrilled to be going home and optimistic that I will keep getting stronger.

Love to all of you.

Harriet

Read Full Post »